My name is Kristie, and I'm Kaedin's mommy and the author of this site.
Many of you have met us in person which is how you came to visit this site in the first place.
It's very common-place for me to chit-chat with just about everyone I run into over the course of my daily travels, so it's not unusual that I've directed people to visit our website to learn more about our family.
Both Kaedin & I are very chatty (to put it nicely!) and we frequently give out our cards to people we meet. When our family is out and about, we get stopped and asked about my leg braces, our service dog Kai (you'll meet him later) or the abnormally large amount of Lego we're hauling around.
Kaedin and I are often more than happy to tell you all all of it- the braces, Kai AND all about our Lego project! We live a life that is anything but normal, and it feels good to connect with others considering that we OFTEN don't get out of the house for days, and sometimes weeks at a time.
Kristie Evans
I'm the generally is the voice behind the website, the lead photographer, & the head Lego junkie of the family - my passion for Lego started when I was just three years old and I played with my very first bucket of Lego at my neighbor's house.
I am very fortunate to have a wonderful family that consists of myself, my husband Justin and our son Kaedin. We've been married since 2011 but were best friends for a little over fourteen years before we fell in love and decided to raise our awesome little boy & get married. We make a great team.
Backing up to before we were a family: I grew up in South Jersey, right outside Philadelphia where I lived in the same house my entire life. As a kid, I played soccer, baseball and roller-hockey and was a self-described tomboy. I loved sports (and I'm generally a very competitive person).
My obsession with Lego started EARLY - I built my first creation (a little hovercraft!) when I was just three and a half from Lego Bricks belonging to my "cool neighbor" (you know, the one who always had THE BEST toys?). Several years later, we had created a full-on Lego city that lived first outside in his back yard, then eventually moved indoors (after his mom got tired of washing hundreds of muddy Lego bricks, no doubt) and after that final move, our Lego city remained standing (and growing) for most of my childhood in the basement of my home.
I've always loved to read and do anything artistic- from creating my own upcycle clothing, to painting and creating elaborate Halloween and Christmas displays, I have a love for all things that allow me to be creative.
Prior to 2010, I was a fairly healthy and incredibly active person. I was a police officer in Florida, after graduating from college in 2005, and SEPSI - the South Eastern Public Safety Institute, in St Petersburg Florida, where I graduated at the top of Police Recruit Class #158. I worked for Charlotte County Sherriff's Office in Florida as a road-patrol Deputy. Eventually I decided on moving back to New Jersey where I grew up, in order to raise my son close to family. It was after the birth of my son that my health took a turn for the worst, and I was eventually diagnosed with Ehlers-Danlos Syndrome. Since that diagnosis- I have spent the majority of my time in three ways: Being a full-time, stay at home parent and homeschooling my son, Kaedin - managing my health and continuing to pursue ways to thrive despite the devastating effects of Ehlers-Danlos Syndome, and managing & organizing our family's massive Lego collection.
Many of you have met us in person which is how you came to visit this site in the first place.
It's very common-place for me to chit-chat with just about everyone I run into over the course of my daily travels, so it's not unusual that I've directed people to visit our website to learn more about our family.
Both Kaedin & I are very chatty (to put it nicely!) and we frequently give out our cards to people we meet. When our family is out and about, we get stopped and asked about my leg braces, our service dog Kai (you'll meet him later) or the abnormally large amount of Lego we're hauling around.
Kaedin and I are often more than happy to tell you all all of it- the braces, Kai AND all about our Lego project! We live a life that is anything but normal, and it feels good to connect with others considering that we OFTEN don't get out of the house for days, and sometimes weeks at a time.
Kristie Evans
I'm the generally is the voice behind the website, the lead photographer, & the head Lego junkie of the family - my passion for Lego started when I was just three years old and I played with my very first bucket of Lego at my neighbor's house.
I am very fortunate to have a wonderful family that consists of myself, my husband Justin and our son Kaedin. We've been married since 2011 but were best friends for a little over fourteen years before we fell in love and decided to raise our awesome little boy & get married. We make a great team.
Backing up to before we were a family: I grew up in South Jersey, right outside Philadelphia where I lived in the same house my entire life. As a kid, I played soccer, baseball and roller-hockey and was a self-described tomboy. I loved sports (and I'm generally a very competitive person).
My obsession with Lego started EARLY - I built my first creation (a little hovercraft!) when I was just three and a half from Lego Bricks belonging to my "cool neighbor" (you know, the one who always had THE BEST toys?). Several years later, we had created a full-on Lego city that lived first outside in his back yard, then eventually moved indoors (after his mom got tired of washing hundreds of muddy Lego bricks, no doubt) and after that final move, our Lego city remained standing (and growing) for most of my childhood in the basement of my home.
I've always loved to read and do anything artistic- from creating my own upcycle clothing, to painting and creating elaborate Halloween and Christmas displays, I have a love for all things that allow me to be creative.
Prior to 2010, I was a fairly healthy and incredibly active person. I was a police officer in Florida, after graduating from college in 2005, and SEPSI - the South Eastern Public Safety Institute, in St Petersburg Florida, where I graduated at the top of Police Recruit Class #158. I worked for Charlotte County Sherriff's Office in Florida as a road-patrol Deputy. Eventually I decided on moving back to New Jersey where I grew up, in order to raise my son close to family. It was after the birth of my son that my health took a turn for the worst, and I was eventually diagnosed with Ehlers-Danlos Syndrome. Since that diagnosis- I have spent the majority of my time in three ways: Being a full-time, stay at home parent and homeschooling my son, Kaedin - managing my health and continuing to pursue ways to thrive despite the devastating effects of Ehlers-Danlos Syndome, and managing & organizing our family's massive Lego collection.
Ehlers-Danlos Syndrome and its impact on our family.
Many people ask, "If Ehlers-Danlos Syndrome is genetic - haven't you had it for your entire life?"
Yes. I have had it my entire life, EDS-3 is something you are born with. Perhaps fortunately, EDS-3 (otherwise known as Hyper-mobility Type) has a WIDE range of symptoms and affects it sufferers in a WIDE range of ways.
"If you've always had EDS, how were you able to play sports and become a police officer prior to 2011?"
When I was a child, the symptoms of my EDS were pretty mild - I was born with two severely turned-in hips, which my doctors mistook early for hip dysplasia and diagnosed me as just having a severe turn-in which could be corrected by bar-shoes. They put this device on me as an infant, but like many EDS-3 babies, I was up and moving FAR too quickly (by just five months old I was up and walking) - and so my parents had to remove the bar-shoes. They blamed this for my many problems with my feet/hips and legs as a child.
I have always walked with a severe toe-in (where my feet turn in with every step). As a child, I dragged my feet and often tripped over them. I would wear the fronts of my shoes terribly, and dragged my toes with every step. I have always had weak muscle tone throughout my body, and my legs were always very thin, and bow-legged. The most severe of my childhood symptoms was my ability to turn my legs 180 degrees in reverse (one at a time) - and I could (and still can) - walk with one foot facing forward, and one facing in reverse. As a child, this caused me no pain and was a "neat party trick" that I showed off. My parents and doctors simply told me I was "double-jointed" and I'd soon outgrow my extreme flexibility. (nope!)
As a child, I had MANY signs and symptoms of Ehlers-Danlos Syndrome, but many of them were brushed off as something else and the puzzle pieces weren't connected until I was TWENTY NINE YEARS OLD - sadly EDS is VERY commonly misdiagnosed, or worse, presumed that the sufferer is merely making it all up.
As a child, these are many of my symptoms and how they were "explained away".
Childhood / Early Adult Symptoms How Symptoms were Misdiagnosed as something besides EDS
Double hip dysplasia with severe in-turned feet at birth : Explained as "extreme flexibility in the joints" - something my parents were told I'd outgrow. As I got older, it became clear that I was not going to outgrow this.
Frequent GI upset in my teens, chronic diarrhea. : I was diagnosed as merely having IBS, in my 20's this diagnosis was changed to Crohn's disease.
Brain fog, sudden onset fatigue and concentration issues. : I was diagnosed with adult ADHD at 17 (adult bc most ADD/ADHD is outgrown or At 17, I began having month-long bouts of inability to stay starting to get better by this age, but my problems seemed to be getting more awake - for months at a time, I would be able to do little severe with age).
more than nap for 20+ hours at a time, I was misdiagnosed
with having MONO twice, but blood tests confirmed I did
not have the Epstien-Barr virus until I was in my mid-20's.
As a child, I became emetaphobic, claustraphobic and : Sensory-response issues are very common with EDS sufferers. I have a
developed a series of disturbing reactions to stimulii - certain severe reaction to tight, small or enclosed spaces and can't get an MRI, even
sounds, textures & temperatures would cause, at best, severe sedated. My emetaphobia has become so severe that I can't be around my
discomfort, and worse - severe mood swings, irrational anger own son if there's any possibility he'll vomit - and I've become incapable of
and total intolerance for situations where I couldn't avoid the tolerating scenarios where I may be exposed to anyone who could be sick.
triggering sight/sound/etc. It was early diagnosed as "Sensory This means I am almost entirely unable to fly, go to crowded public places,
Perceptive Disorder". (This is similar to many people on the Autism hospitals, doctor's offices, amusement parks, airplanes, boats - they cause
Spectrum - I have no other similarities to Autism.) severe panic attacks. Sensory issues have also impacted my ability to tolerate
As a child this often manifested in an intolerance to many many common sounds (certain accents, the pronunciation of certain words,
clothing textures - for years I couldn't wear socks with seams & whistling and other high-pitch sounds, anyone chewing, spitting, sneezing,
couldn't stand the texture of denim. I didn't wear long-pants for four coughing or clearing their throat. These sounds often trigger panic-attacks.
years when I became extremely intolerance of being over-heated.
Starting nearly the same time as my period, I began having symptoms : After the birth of my son, these bladder problems became more severe
associated with recurring UTI's and bladder issues. Having always and much more chronic and recurrent. I was hospitalized over a dozen
had a severe aversion to public restrooms (likely tied to the times and treated with heavy IV antibiotics, which later were determined
emetaphobia) - I had serious trouble in school because I refused to have caused permanent damage to my tendons in my legs (EDS patients
to use any public restroom for twelve years of public school. should NEVER be given flouroquinelone antibiotics like Levoquin and Cipro.
Interstitial Cystitis is a COMMONLY occurring co-mordbidity (commonly
coexisting disorders to EDS) whose symptoms mimic constant UTI's.
As a kid, I had a multitude of physical injuries I suffered, including bones : Vitamin D deficiency has shown to cause bone breakage in children
that broke from occurrences that by all accounts should NOT have with EDS. Terrifyingly - many parents of EDS children have had to
caused bone fractures. Multiple times, later x-rays determined that fight to re-gain custody of their children after unexplained broken
I suffered from a multitude of hairline fractures that were never treated. bones have led to allegations of child abuse that never occurred.
Starting in middle school, my constant sprains, strains, dislocations and : Even into adulthood, I frequently had injuries that seemed more
unexplained pain were becoming a constant issue. Doctors couldn't find easily obtained, or took longer to heal than anyone else. I have had
any specific injuries, or injuries were explained away as being common to twisted ankles, joint dislocations (that often re-seated but still
kids, like myself, who played a lot of sports. I began being bullied for often caused lasting pain, pinched nerves and other on-going symptoms).
being on crutches or having joints wrapped due to never-ending fairly minor As a police officer, I eventually obtained a reputation for being "sick"
injuries - I was teased for being a hypo-condriac and faking injuries for more often than others my age, and it was difficult and frustrating
attention, despite the fact that I was highly frustrated by the injuries and was to feel as if I was not trusted, or as if my injuries were not real. In
extremely unhappy about sitting out of things like gym class or soccer games. reality, I loved my job and never wanted to miss work.
I was diagnosed with "growing pains" and sat out of gym-class for years. In respect to my career, I was often worked despite injuries that
should have kept me home - I worked with broken bones, dislocations
and even hid an iv-line under long-sleeves for several weeks so that
I didn't have to call out sick.
As a child - and well into adulthood, I've commonly developed seemingly: As an adult, these hives continued, and I developed keratotis
severe allergic reactions to ENTIRELY random things. I've had severe hives pilaris - visible keratin plugs that form in pores often on the upper
and anaphylactic reactions to a multitude of things - sometimes these things arms and legs, which look like little red bumps. I would also break
would ALWAYS cause the reaction (certain carpet cleaner, terriyaki sauce, out in rashes and hives, often from nothing identifiable. It was
Tide Detergent, black pepper, capcasin - the spicy element in peppers) - finally diagnosed as MCAD - Mast Cell Activation Disorder, another
other times, I would have severe reactions to things we couldn't pinpoint. I commonly co-existing disorder with Ehlers-Danlos syndrome.
would have a severe case of hives, a fever, mouth/throat and tounge swelling MCAD is an over reaction of your immune system and it causes
but there was no new food, no new products used - and nothing we could sudden over-reactions to histamines, which basically means the
suspect as a cause. sufferer can be "allergic" to anything on any given day. I carry an
EPI-pen and benedryl to combat symptoms and avoid known triggers like capcasin in spicy foods, and black pepper.
Lastly - another common issue in childhood was the fact that I would: My intolerance for heat/humidity grew into sudden bouts of
easily become over-heated during outdoor activities like field day or a dizziness when I would become stressed - including my blacking out
trip to an amusement park. If I became suddenly stressed-out or injured on a burglary call to a gun-store at 4am while working night-shift as
(like the time my hand was bitten pretty badly by a dog), I would pass out. a patrol Deputy. This was a terrifying incident that was a catalyst for
In my teens, I suffered unexplained chest-pains and heart palpitations. my ultimately deciding to retire from Law Enforcement forever. The
A dozen days with a heart monitor was unable to diagnose the problem. symptoms were caused by a condition called POTS - or Postural Orthostatic Tachycardia Syndrome. That same condition causes sudden on-set chest pains that feel very similar to a person who is suffering from a heart-attack. POTS is worsened by chronic
dehydration, low Vitamin D & low sodium - the problem is - no amount of intake of these substances seems to keep my levels in check. My body simply can't properly process Vit D and Sodium, even with high doses of prescription vitamins and salt intake.
Many people ask, "If Ehlers-Danlos Syndrome is genetic - haven't you had it for your entire life?"
Yes. I have had it my entire life, EDS-3 is something you are born with. Perhaps fortunately, EDS-3 (otherwise known as Hyper-mobility Type) has a WIDE range of symptoms and affects it sufferers in a WIDE range of ways.
"If you've always had EDS, how were you able to play sports and become a police officer prior to 2011?"
When I was a child, the symptoms of my EDS were pretty mild - I was born with two severely turned-in hips, which my doctors mistook early for hip dysplasia and diagnosed me as just having a severe turn-in which could be corrected by bar-shoes. They put this device on me as an infant, but like many EDS-3 babies, I was up and moving FAR too quickly (by just five months old I was up and walking) - and so my parents had to remove the bar-shoes. They blamed this for my many problems with my feet/hips and legs as a child.
I have always walked with a severe toe-in (where my feet turn in with every step). As a child, I dragged my feet and often tripped over them. I would wear the fronts of my shoes terribly, and dragged my toes with every step. I have always had weak muscle tone throughout my body, and my legs were always very thin, and bow-legged. The most severe of my childhood symptoms was my ability to turn my legs 180 degrees in reverse (one at a time) - and I could (and still can) - walk with one foot facing forward, and one facing in reverse. As a child, this caused me no pain and was a "neat party trick" that I showed off. My parents and doctors simply told me I was "double-jointed" and I'd soon outgrow my extreme flexibility. (nope!)
As a child, I had MANY signs and symptoms of Ehlers-Danlos Syndrome, but many of them were brushed off as something else and the puzzle pieces weren't connected until I was TWENTY NINE YEARS OLD - sadly EDS is VERY commonly misdiagnosed, or worse, presumed that the sufferer is merely making it all up.
As a child, these are many of my symptoms and how they were "explained away".
Childhood / Early Adult Symptoms How Symptoms were Misdiagnosed as something besides EDS
Double hip dysplasia with severe in-turned feet at birth : Explained as "extreme flexibility in the joints" - something my parents were told I'd outgrow. As I got older, it became clear that I was not going to outgrow this.
Frequent GI upset in my teens, chronic diarrhea. : I was diagnosed as merely having IBS, in my 20's this diagnosis was changed to Crohn's disease.
Brain fog, sudden onset fatigue and concentration issues. : I was diagnosed with adult ADHD at 17 (adult bc most ADD/ADHD is outgrown or At 17, I began having month-long bouts of inability to stay starting to get better by this age, but my problems seemed to be getting more awake - for months at a time, I would be able to do little severe with age).
more than nap for 20+ hours at a time, I was misdiagnosed
with having MONO twice, but blood tests confirmed I did
not have the Epstien-Barr virus until I was in my mid-20's.
As a child, I became emetaphobic, claustraphobic and : Sensory-response issues are very common with EDS sufferers. I have a
developed a series of disturbing reactions to stimulii - certain severe reaction to tight, small or enclosed spaces and can't get an MRI, even
sounds, textures & temperatures would cause, at best, severe sedated. My emetaphobia has become so severe that I can't be around my
discomfort, and worse - severe mood swings, irrational anger own son if there's any possibility he'll vomit - and I've become incapable of
and total intolerance for situations where I couldn't avoid the tolerating scenarios where I may be exposed to anyone who could be sick.
triggering sight/sound/etc. It was early diagnosed as "Sensory This means I am almost entirely unable to fly, go to crowded public places,
Perceptive Disorder". (This is similar to many people on the Autism hospitals, doctor's offices, amusement parks, airplanes, boats - they cause
Spectrum - I have no other similarities to Autism.) severe panic attacks. Sensory issues have also impacted my ability to tolerate
As a child this often manifested in an intolerance to many many common sounds (certain accents, the pronunciation of certain words,
clothing textures - for years I couldn't wear socks with seams & whistling and other high-pitch sounds, anyone chewing, spitting, sneezing,
couldn't stand the texture of denim. I didn't wear long-pants for four coughing or clearing their throat. These sounds often trigger panic-attacks.
years when I became extremely intolerance of being over-heated.
Starting nearly the same time as my period, I began having symptoms : After the birth of my son, these bladder problems became more severe
associated with recurring UTI's and bladder issues. Having always and much more chronic and recurrent. I was hospitalized over a dozen
had a severe aversion to public restrooms (likely tied to the times and treated with heavy IV antibiotics, which later were determined
emetaphobia) - I had serious trouble in school because I refused to have caused permanent damage to my tendons in my legs (EDS patients
to use any public restroom for twelve years of public school. should NEVER be given flouroquinelone antibiotics like Levoquin and Cipro.
Interstitial Cystitis is a COMMONLY occurring co-mordbidity (commonly
coexisting disorders to EDS) whose symptoms mimic constant UTI's.
As a kid, I had a multitude of physical injuries I suffered, including bones : Vitamin D deficiency has shown to cause bone breakage in children
that broke from occurrences that by all accounts should NOT have with EDS. Terrifyingly - many parents of EDS children have had to
caused bone fractures. Multiple times, later x-rays determined that fight to re-gain custody of their children after unexplained broken
I suffered from a multitude of hairline fractures that were never treated. bones have led to allegations of child abuse that never occurred.
Starting in middle school, my constant sprains, strains, dislocations and : Even into adulthood, I frequently had injuries that seemed more
unexplained pain were becoming a constant issue. Doctors couldn't find easily obtained, or took longer to heal than anyone else. I have had
any specific injuries, or injuries were explained away as being common to twisted ankles, joint dislocations (that often re-seated but still
kids, like myself, who played a lot of sports. I began being bullied for often caused lasting pain, pinched nerves and other on-going symptoms).
being on crutches or having joints wrapped due to never-ending fairly minor As a police officer, I eventually obtained a reputation for being "sick"
injuries - I was teased for being a hypo-condriac and faking injuries for more often than others my age, and it was difficult and frustrating
attention, despite the fact that I was highly frustrated by the injuries and was to feel as if I was not trusted, or as if my injuries were not real. In
extremely unhappy about sitting out of things like gym class or soccer games. reality, I loved my job and never wanted to miss work.
I was diagnosed with "growing pains" and sat out of gym-class for years. In respect to my career, I was often worked despite injuries that
should have kept me home - I worked with broken bones, dislocations
and even hid an iv-line under long-sleeves for several weeks so that
I didn't have to call out sick.
As a child - and well into adulthood, I've commonly developed seemingly: As an adult, these hives continued, and I developed keratotis
severe allergic reactions to ENTIRELY random things. I've had severe hives pilaris - visible keratin plugs that form in pores often on the upper
and anaphylactic reactions to a multitude of things - sometimes these things arms and legs, which look like little red bumps. I would also break
would ALWAYS cause the reaction (certain carpet cleaner, terriyaki sauce, out in rashes and hives, often from nothing identifiable. It was
Tide Detergent, black pepper, capcasin - the spicy element in peppers) - finally diagnosed as MCAD - Mast Cell Activation Disorder, another
other times, I would have severe reactions to things we couldn't pinpoint. I commonly co-existing disorder with Ehlers-Danlos syndrome.
would have a severe case of hives, a fever, mouth/throat and tounge swelling MCAD is an over reaction of your immune system and it causes
but there was no new food, no new products used - and nothing we could sudden over-reactions to histamines, which basically means the
suspect as a cause. sufferer can be "allergic" to anything on any given day. I carry an
EPI-pen and benedryl to combat symptoms and avoid known triggers like capcasin in spicy foods, and black pepper.
Lastly - another common issue in childhood was the fact that I would: My intolerance for heat/humidity grew into sudden bouts of
easily become over-heated during outdoor activities like field day or a dizziness when I would become stressed - including my blacking out
trip to an amusement park. If I became suddenly stressed-out or injured on a burglary call to a gun-store at 4am while working night-shift as
(like the time my hand was bitten pretty badly by a dog), I would pass out. a patrol Deputy. This was a terrifying incident that was a catalyst for
In my teens, I suffered unexplained chest-pains and heart palpitations. my ultimately deciding to retire from Law Enforcement forever. The
A dozen days with a heart monitor was unable to diagnose the problem. symptoms were caused by a condition called POTS - or Postural Orthostatic Tachycardia Syndrome. That same condition causes sudden on-set chest pains that feel very similar to a person who is suffering from a heart-attack. POTS is worsened by chronic
dehydration, low Vitamin D & low sodium - the problem is - no amount of intake of these substances seems to keep my levels in check. My body simply can't properly process Vit D and Sodium, even with high doses of prescription vitamins and salt intake.
Often in the hospital, my incredible husband has stayed all night just to help comfort me.
I am far from the only person with Ehlers-Danlos Syndrome who was mid-diagnosed or whose chronic ailments were explained away as a multitude of minor issues. My entire life, I've known that I was somehow, fundamentally, physically different from my peers. I've always been VERY easy to tire - wondering how "normal" people don't have to sit down while waiting to check out with their groceries, or getting so winded by simply taking a shower that I'd have to spend the better part of the rest of my day recovering.
Leaving the life that I'd built for myself in Florida was traumatic. I had to walk away from the first house that I'd bought for myself, the rewarding & fulfilling career as a first responder that I LOVED, and my total and complete freedom - but the reality was that by my late 20's, my health was steadily declining.
Kaedin was born in January 2011, and by the final month of my pregnancy, I was in so much pain I could barely breath. (We would later find out that the EXTREME laxity in my hips was causing dozens of joints to constantly sit out of place (subluxation) and causing others to fully dislocate as if there was nothing holding them place. It was a good thing I'd moved back home to New Jersey - I've been very fortunate to have the support of my wonderful husband and my family as I've gone through the long process of getting diagnosed, and getting my symptoms under control.
Leaving the life that I'd built for myself in Florida was traumatic. I had to walk away from the first house that I'd bought for myself, the rewarding & fulfilling career as a first responder that I LOVED, and my total and complete freedom - but the reality was that by my late 20's, my health was steadily declining.
Kaedin was born in January 2011, and by the final month of my pregnancy, I was in so much pain I could barely breath. (We would later find out that the EXTREME laxity in my hips was causing dozens of joints to constantly sit out of place (subluxation) and causing others to fully dislocate as if there was nothing holding them place. It was a good thing I'd moved back home to New Jersey - I've been very fortunate to have the support of my wonderful husband and my family as I've gone through the long process of getting diagnosed, and getting my symptoms under control.
I was officially diagnosed by 2012 with the following:
Ehlers-Danlos Syndrome Type 3 (Hyper-mobility Type, which causes extremely loose joints that dislocate and sublux all the time. This triggers severe muscle spasms and tightening that leads to more pain).
Severe Dental Decay related to Connective Tissue Dysfunction: Because connective tissue produces the protection for your enamel - the enamel on my teeth is thin, yellowed and brittle. My teeth break and fall apart from very little, no matter how well I care for them. At this point, all of my teeth have either been pulled/removed and the thirteen teeth I have remaining have been capped with crowns. All of the remaining teeth need to be removed and replaced with permanent dentures and implants to protect from bone loss. It's cost nearly $17,000 in the last four years, and I still have about $40,000 in dental care needed in order to have teeth that are secure - and that's not even counting the cosmetic aspect of not having teeth.
Interstitial Cystitis (bladder pain, pressure, frequency & urgency- pelvic floor dysfunction.)
Mast Cell Activation Disorder (Sudden onset allergies, rashes and allergic reactions to common every day items and situations - basically, you'll be allergic to something one day and then never again. When you hear of people being allergic to the sun, or to water, this is most often the cause!)
Reynaud's Syndrome (numbness, pain, electrical tingling, burning in the extremities - my fingers and toes turn bright white or blue for a period of time, caused by stress, anger or cold weather).
Crohn's Disease & Gastroperesis / Chronic nausea, GI slowdown, and complete lack of appetite.
Postural Orthostatic Tachycardia Syndrome (POTS) which causes sudden dizziness, brain fog, chronic fatigue and insomnia..
I've also had a positive ANA (which is probably because of arthritis caused by all the on going joint damage, and chronic vitamin deficiencies like sodium, potassium B-12 & vitamin D-3 which is a constant battle as I'm always dehydrated and can be nearly impossible to run an IV in, making the MANY many hospitalizations *lots* of fun. (Sarcasm!)
You can learn more about EDS by visiting my blog by going to this link.
Please check out my blog above - I am making an effort to chronicle what life is like with EDS-3 and I hope that my experiences, in getting diagnosed, in treating the symptoms, and in dealing with the on-going affects of EDS, that my posts will help others that may be going through similar situations in their lives or because they know and love someone who is living with a chronic illness.
With these answers, I've finally started putting the pieces of the puzzle together and working towards management of symptoms which is the ONLY current treatment for the above conditions (with the exceptions of Crohn's Disease, which thankfully has been in remission since 2009. Fortunately, I've been off medications for Crohn's disease because they, like pain medications, have caused inflammation of my liver and elevated liver enzymes.
The most difficult part of living with EDS is the severe, chronic, unending pain. It is the most miserable part of living with these conditions, and I'd be lying if I didn't explain just how devastating, depressing and utterly draining it is to be in so much pain non-stop. Chronic pain causes fatigue that wipes me out - some days I can sleep until 3pm, wake up for a few hours (unable to actually get OUT of bed) and I can go right back to sleep for the night - all by 7pm!). Other days, something "simple" like taking a shower, is such a painful and exhausting ordeal (imagine all the extra muscles and energy you use to keep your balance, not to mention adjusting to the temperature changes) - By 32, we invested in a shower chair so that I no longer had to take showers only when my husband could supervise and assist - that's what living with EDS has been about - it has FULLY and COMPLETELY robbed me of my independence.
From my fingers, to my hips - I live every day with chronic, un-yielding pain and fatigue that is so draining, that at times, completing sentences is too much to ask of my brain. I OFTEN lie awake all night, in total darkness and silence and yet unable to sleep. We keep our bedroom at 63 degrees - the air conditioning has to run even in the coldest months because the heat is physically painful and makes me severely dizzy and nauseous. I have to plan for every single activity to take ten times longer than it would have healthy - and more often than not, I need help with every tasks.
I'm incredibly lucky to have such a wonderful and supportive husband - and Kaedin is the sweetest, most helpful kid there is. Two years ago today, I lost my beautiful service dog, Bear- and since then, Kai, a beautiful Akita/Saint Bernard mix has joined our family as our new service dog (technically, he's MY service dog, but he helps us all out so much!). I hope I haven't bored you to death with so much detail - but it's important to me that we use this platform to help share what life is like with a chronic condition. I hope that you'll take a moment to imagine what it's like, and to consider how you treat people when they LOOK healthy but are not. On my best days - I can "pass" - sometimes even for hours. Unfortunately, those days have become a golden rarity. When it comes to things like family vacation, a friend's wedding, Trick or Treating and anything else that requires planning and prolonged energy - there's always a good chance that I'll end up backing out at the last moment. Try, for a moment, to imagine how quickly you loose friends when you continually cancel plans and back out of things at the last moment. It doesn't take long before you stop getting invited to things.
Ehlers-Danlos Syndrome Type 3 (Hyper-mobility Type, which causes extremely loose joints that dislocate and sublux all the time. This triggers severe muscle spasms and tightening that leads to more pain).
Severe Dental Decay related to Connective Tissue Dysfunction: Because connective tissue produces the protection for your enamel - the enamel on my teeth is thin, yellowed and brittle. My teeth break and fall apart from very little, no matter how well I care for them. At this point, all of my teeth have either been pulled/removed and the thirteen teeth I have remaining have been capped with crowns. All of the remaining teeth need to be removed and replaced with permanent dentures and implants to protect from bone loss. It's cost nearly $17,000 in the last four years, and I still have about $40,000 in dental care needed in order to have teeth that are secure - and that's not even counting the cosmetic aspect of not having teeth.
Interstitial Cystitis (bladder pain, pressure, frequency & urgency- pelvic floor dysfunction.)
Mast Cell Activation Disorder (Sudden onset allergies, rashes and allergic reactions to common every day items and situations - basically, you'll be allergic to something one day and then never again. When you hear of people being allergic to the sun, or to water, this is most often the cause!)
Reynaud's Syndrome (numbness, pain, electrical tingling, burning in the extremities - my fingers and toes turn bright white or blue for a period of time, caused by stress, anger or cold weather).
Crohn's Disease & Gastroperesis / Chronic nausea, GI slowdown, and complete lack of appetite.
Postural Orthostatic Tachycardia Syndrome (POTS) which causes sudden dizziness, brain fog, chronic fatigue and insomnia..
I've also had a positive ANA (which is probably because of arthritis caused by all the on going joint damage, and chronic vitamin deficiencies like sodium, potassium B-12 & vitamin D-3 which is a constant battle as I'm always dehydrated and can be nearly impossible to run an IV in, making the MANY many hospitalizations *lots* of fun. (Sarcasm!)
You can learn more about EDS by visiting my blog by going to this link.
Please check out my blog above - I am making an effort to chronicle what life is like with EDS-3 and I hope that my experiences, in getting diagnosed, in treating the symptoms, and in dealing with the on-going affects of EDS, that my posts will help others that may be going through similar situations in their lives or because they know and love someone who is living with a chronic illness.
With these answers, I've finally started putting the pieces of the puzzle together and working towards management of symptoms which is the ONLY current treatment for the above conditions (with the exceptions of Crohn's Disease, which thankfully has been in remission since 2009. Fortunately, I've been off medications for Crohn's disease because they, like pain medications, have caused inflammation of my liver and elevated liver enzymes.
The most difficult part of living with EDS is the severe, chronic, unending pain. It is the most miserable part of living with these conditions, and I'd be lying if I didn't explain just how devastating, depressing and utterly draining it is to be in so much pain non-stop. Chronic pain causes fatigue that wipes me out - some days I can sleep until 3pm, wake up for a few hours (unable to actually get OUT of bed) and I can go right back to sleep for the night - all by 7pm!). Other days, something "simple" like taking a shower, is such a painful and exhausting ordeal (imagine all the extra muscles and energy you use to keep your balance, not to mention adjusting to the temperature changes) - By 32, we invested in a shower chair so that I no longer had to take showers only when my husband could supervise and assist - that's what living with EDS has been about - it has FULLY and COMPLETELY robbed me of my independence.
From my fingers, to my hips - I live every day with chronic, un-yielding pain and fatigue that is so draining, that at times, completing sentences is too much to ask of my brain. I OFTEN lie awake all night, in total darkness and silence and yet unable to sleep. We keep our bedroom at 63 degrees - the air conditioning has to run even in the coldest months because the heat is physically painful and makes me severely dizzy and nauseous. I have to plan for every single activity to take ten times longer than it would have healthy - and more often than not, I need help with every tasks.
I'm incredibly lucky to have such a wonderful and supportive husband - and Kaedin is the sweetest, most helpful kid there is. Two years ago today, I lost my beautiful service dog, Bear- and since then, Kai, a beautiful Akita/Saint Bernard mix has joined our family as our new service dog (technically, he's MY service dog, but he helps us all out so much!). I hope I haven't bored you to death with so much detail - but it's important to me that we use this platform to help share what life is like with a chronic condition. I hope that you'll take a moment to imagine what it's like, and to consider how you treat people when they LOOK healthy but are not. On my best days - I can "pass" - sometimes even for hours. Unfortunately, those days have become a golden rarity. When it comes to things like family vacation, a friend's wedding, Trick or Treating and anything else that requires planning and prolonged energy - there's always a good chance that I'll end up backing out at the last moment. Try, for a moment, to imagine how quickly you loose friends when you continually cancel plans and back out of things at the last moment. It doesn't take long before you stop getting invited to things.
I miss my career - a heartbreaking amount. I loved being a police officer, and having to leave my career after working so hard to get it, nearly destroyed me. Everything ABOUT Ehlers-Danlos Syndrome has been that way. At every turn, it's nearly destroyed me, and yet, I keep fighting - I keep relying on my amazing husband, my awesome kid (*the best on the planet), my family members, and my awesome service dog - and I keep plugging along, taking things one day at a time and doing the best I can.
Hopefully our story reaches others who are living with EDS, and their families, and that my words help a fellow Zebra to feel less alone. Hopefully this project brings attention to invisible illnesses like EDS, and helps spread awareness and understanding.
<3 Kristie Evans
Meet Kaedin!
Kaedin, my incredible son is five years old. Kaedin is extremely bright, and has been ahead of schedule in every aspect of his growth - he's very tall, often mistaken for older than he is. He's very well-spoken and we're complimented regularly on how well he communicates with adults and other kids. He's learned to read, he loves math, and he's got a very technical and creative mind.
Kaedin's favorite hobbies include playing Minecraft and Roblox, as well as several other games like Mario Kart 8 and Mario Maker - and he loves watching YouTube (every bit as much as we'll allow). He wants to host his own Youtube gaming channel in addition to our family Lego project!
Kaedin has been showing symptoms of EDS since he was very little - many EDSers were VERY strong as infants, and Kaedin was. While mommy was up and walking at just FIVE months old - Kaedin was able to support his full weight around that same age, but he had REMARKABLE upper body strength. He was able to do pull-ups on the side of his crib. At just six weeks old, he was holding up his full bottles, and by thirteen weeks he was able to crawl from the foot of our bed up to our pillows. He was an exceptional baby - very quiet, well behaved and he rarely ever cried. But we also saw a lot of signs that were concerning - joints that would feel extremely loose, and that would pop and snap.
It's very common for those with EDS to have exceptionally low vitamin D and frighteningly - many parents of EDS kids have found themselves facing horrible allegations of child abuse when their kids present with inexplicably broken bones, and bruising with no explanation. We have been very fortunate that Kaedin has had more mild symptoms - but then, so did I at his age. We've seen him complain about painful joints, and suffer small dislocations like fingers and his ankles- plus complaints about ongoing back pain before he even turned five. We stay on top of his fluid intake and vitamin D, to avoid many of these issues getting worse. Unfortunately there have been many families who have had their children stolen away from them by Child Services and their state - all because of undiagnosed Ehlers-Danlos Syndrome.
Kaedin's favorite hobbies include playing Minecraft and Roblox, as well as several other games like Mario Kart 8 and Mario Maker - and he loves watching YouTube (every bit as much as we'll allow). He wants to host his own Youtube gaming channel in addition to our family Lego project!
Kaedin has been showing symptoms of EDS since he was very little - many EDSers were VERY strong as infants, and Kaedin was. While mommy was up and walking at just FIVE months old - Kaedin was able to support his full weight around that same age, but he had REMARKABLE upper body strength. He was able to do pull-ups on the side of his crib. At just six weeks old, he was holding up his full bottles, and by thirteen weeks he was able to crawl from the foot of our bed up to our pillows. He was an exceptional baby - very quiet, well behaved and he rarely ever cried. But we also saw a lot of signs that were concerning - joints that would feel extremely loose, and that would pop and snap.
It's very common for those with EDS to have exceptionally low vitamin D and frighteningly - many parents of EDS kids have found themselves facing horrible allegations of child abuse when their kids present with inexplicably broken bones, and bruising with no explanation. We have been very fortunate that Kaedin has had more mild symptoms - but then, so did I at his age. We've seen him complain about painful joints, and suffer small dislocations like fingers and his ankles- plus complaints about ongoing back pain before he even turned five. We stay on top of his fluid intake and vitamin D, to avoid many of these issues getting worse. Unfortunately there have been many families who have had their children stolen away from them by Child Services and their state - all because of undiagnosed Ehlers-Danlos Syndrome.
Kaedin is extremely smart and outgoing, funny and very mature for his age. We've gotten compliments about his behavior and his outgoing, sweet and friendly personality since he was very little. Kaedin learned some sign language as a baby, and now at five is well on his way to reading. We've been home-schooling with him since he was three years old, and he's very well versed in many topics that he's interested in - like the weather. He's always excited to tell everyone about the time we almost got caught out in a tornado.
His favorite past times are using his IPad, watching Nick Jr (his favorites shows are Peppa Pig, Diego, Paw Patrol and Blaze - he also likes watching Peg + Cat on PBS, Brain Games on NatGeo, and Surviving the Storm on the Weather Channel!) & his favorite games on the Wii-U are Mario Kart, Mario Maker and Minecraft!
Much like mommy & daddy- Kaedin's favorite past-times include traveling. He loves simple outtings - going on hikes with our friend Mike and his sons (Abe & John), he loves going to playgrounds and meeting other kids, and his favorite day-trips involve amusement parks (we have Season Passes to Six Flags Great Adventure, Hurricane Harbor, Legoland & Diggerland!).
His favorite toys are of COURSE, his Minecraft Legos (Mommy promises never to organize or sort those - he's got his own bin that mommy isn't allowed to organize!) His other favorites are his huge collection of NERF guns (he asks for a new one EVERY time we go out!) - he's also got all of the Paw Patrol toys, lots of Matchbox cars (his favorite are the color-changers) and lots of action hero toys made by Imaginext (his favorite is the Ghost-Busters Firehouse).
His favorite family trips were to Oahu, Hawaii and the Gulf Coast of Florida, plus our recent trips to Syracuse NY and Boston Massachusetts but he also loves day trips near home to Philadelphia, New York City and the Ocean City, NJ boardwalk.
He asks to go on trips *ALL the time* and his favorite place to stay is "the Dancing H" (Otherwise known as Holiday Inn). We've taken some great road trips up and down the east coast of the US, to Boston Mass, and we drove all the way to Wisconsin and Minnesota when we adopted our new service dog, Kai (we got to see the Mall of America, too!) Kaedin remembers all of our family trips in detail (Even Hawaii when he was only two), and he's always excited to tell people about all the places he's been - his very first trip was at just THIRTEEN weeks old, when he and mommy flew to Florida and drove back to NJ to help transport rescue pets!
By November 2016 - these are all the States that Kaedin has visited
That's a total of 26 / 50 states by the time he was just FIVE years old!
His favorite past times are using his IPad, watching Nick Jr (his favorites shows are Peppa Pig, Diego, Paw Patrol and Blaze - he also likes watching Peg + Cat on PBS, Brain Games on NatGeo, and Surviving the Storm on the Weather Channel!) & his favorite games on the Wii-U are Mario Kart, Mario Maker and Minecraft!
Much like mommy & daddy- Kaedin's favorite past-times include traveling. He loves simple outtings - going on hikes with our friend Mike and his sons (Abe & John), he loves going to playgrounds and meeting other kids, and his favorite day-trips involve amusement parks (we have Season Passes to Six Flags Great Adventure, Hurricane Harbor, Legoland & Diggerland!).
His favorite toys are of COURSE, his Minecraft Legos (Mommy promises never to organize or sort those - he's got his own bin that mommy isn't allowed to organize!) His other favorites are his huge collection of NERF guns (he asks for a new one EVERY time we go out!) - he's also got all of the Paw Patrol toys, lots of Matchbox cars (his favorite are the color-changers) and lots of action hero toys made by Imaginext (his favorite is the Ghost-Busters Firehouse).
His favorite family trips were to Oahu, Hawaii and the Gulf Coast of Florida, plus our recent trips to Syracuse NY and Boston Massachusetts but he also loves day trips near home to Philadelphia, New York City and the Ocean City, NJ boardwalk.
He asks to go on trips *ALL the time* and his favorite place to stay is "the Dancing H" (Otherwise known as Holiday Inn). We've taken some great road trips up and down the east coast of the US, to Boston Mass, and we drove all the way to Wisconsin and Minnesota when we adopted our new service dog, Kai (we got to see the Mall of America, too!) Kaedin remembers all of our family trips in detail (Even Hawaii when he was only two), and he's always excited to tell people about all the places he's been - his very first trip was at just THIRTEEN weeks old, when he and mommy flew to Florida and drove back to NJ to help transport rescue pets!
By November 2016 - these are all the States that Kaedin has visited
That's a total of 26 / 50 states by the time he was just FIVE years old!
Dealing with EDS and our family's love of travel is one of the biggest reasons we've chosen to continue home-schooling instead of a traditional brick-and-mortar education. Instead, we can cover as much of topics as we want to, and dive deeper into things we both really enjoy learning more about.
We're chosing an education based on "unschooling" - the concept of investigating and learning more about topics he's interested in is a great way to ensure that he's got a lifetime love of learning. Kaedin's favorite subjects are math, sign-language and science (he loves geology and learning more about earth-science topics like weather systems, plants and animals). He loves playing all the learning games on his Ipad, and he's getting REALLY good with his handwriting.
Kaedin has some every day chores- he helps feed and water the hermit crab and our pet hedgehog, both of who live in his bedroom. He feeds our three dogs dinner and brings in their dishes - as well as helps mommy taking Kai (our service dog) in and out during the day.
His favorite season is Spring because he likes to pick flowers for mommy (how is this kid not the sweetest kid EVER!?) His favorite holiday is Christmas, and he hopes every year for lots of snow! (He also loves to go sledding and to throw snowballs at daddy). He says Halloween is a very close second place though because he loves making our costumes and trick or treating every year. (it's mommy's favorite too!).
Justin Evans
Oh, wait, wait... that's not him. That's his sig-fig (we call him "Daddy-fig")... Daddy spends a pretty good amount of time avoiding the camera, but we've got a couple good pictures of him somewhere!
Justin & I met in high school in South Jersey. We were 14 & 15 when we met, I was one grade ahead of him, but we laugh about how we were introduced. I was helping to teach a business technologies class (ironically building websites) and Justin was hanging out with the network administrator. When the teacher introduced me to Justin, I assumed that with his greying hair and keys to most of the building, that he was an employee. I was caught very off guard when Mrs. D explained that Justin was actually a freshman. We both did stage and tech crew for the theatre program and eventually we became good friends outside of school. By the time I graduated, Justin was one of my best friends. And a few years out of high school, When I moved to Florida, Justin was the one thing that brought me back home to New Jersey regularly.
From 1997 until 2011.. for fourteen years, we were best friends. From 2 am phone calls that never ended, to having him fix my computers one after another, I would endlessly harass him to visit me in Florida, and he would tell me to move back to Jersey. We went to parties, concerts, the Renaisaance Faires... we bonded over music, our common love of shopping (flea markets, thrift stores, yard sales, you name it! ). He took road trips to Florida to help me move, and was always my first call when anything happened - good and bad.
2010 -everything changed. My health was worsening and I was forced to walk away from my career in law enforcement. Add to that an unplanned and unwabted pregnancy... and I was not doing well. I moved home and Justin came to my rescue like a super hero. From getting me out of the house to offering to accompany me to the hospital for my csection and to deal with the adoption... Justin was my rock. Less than two weeks before my due date, he stopped going home and we realized that we had fallen in love. When they handed him our gorgeous little boy, it was his suggestion that we both reevaluate our plans and that we should just be parents. Our lives transformed FAST... We never really dated,but seven months later we were married and raising our beautiful son!
Life has been crazy, but we've been happily married for five years, and in 2016, I jad my tubal ligation reversed, as we're considering adding one more baby to our whirlwind family. Justin has always been my best friend, we joke about how we used to be each others back up plan (we once decided we'd get married at 35 if we were both still single)... we didn't make it to 35. There's NOTHING better than being married to your Best Friend. <3
Justin & I met in high school in South Jersey. We were 14 & 15 when we met, I was one grade ahead of him, but we laugh about how we were introduced. I was helping to teach a business technologies class (ironically building websites) and Justin was hanging out with the network administrator. When the teacher introduced me to Justin, I assumed that with his greying hair and keys to most of the building, that he was an employee. I was caught very off guard when Mrs. D explained that Justin was actually a freshman. We both did stage and tech crew for the theatre program and eventually we became good friends outside of school. By the time I graduated, Justin was one of my best friends. And a few years out of high school, When I moved to Florida, Justin was the one thing that brought me back home to New Jersey regularly.
From 1997 until 2011.. for fourteen years, we were best friends. From 2 am phone calls that never ended, to having him fix my computers one after another, I would endlessly harass him to visit me in Florida, and he would tell me to move back to Jersey. We went to parties, concerts, the Renaisaance Faires... we bonded over music, our common love of shopping (flea markets, thrift stores, yard sales, you name it! ). He took road trips to Florida to help me move, and was always my first call when anything happened - good and bad.
2010 -everything changed. My health was worsening and I was forced to walk away from my career in law enforcement. Add to that an unplanned and unwabted pregnancy... and I was not doing well. I moved home and Justin came to my rescue like a super hero. From getting me out of the house to offering to accompany me to the hospital for my csection and to deal with the adoption... Justin was my rock. Less than two weeks before my due date, he stopped going home and we realized that we had fallen in love. When they handed him our gorgeous little boy, it was his suggestion that we both reevaluate our plans and that we should just be parents. Our lives transformed FAST... We never really dated,but seven months later we were married and raising our beautiful son!
Life has been crazy, but we've been happily married for five years, and in 2016, I jad my tubal ligation reversed, as we're considering adding one more baby to our whirlwind family. Justin has always been my best friend, we joke about how we used to be each others back up plan (we once decided we'd get married at 35 if we were both still single)... we didn't make it to 35. There's NOTHING better than being married to your Best Friend. <3
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