My story

My rare disease Storys

My name is Kate & I have FND. AMPS, HSD , & a under developed Cerebellum to name my rare disorders.

The beginning (infancy)

I was born July 8th 2002 in Nevada USA 🇺🇸 Right away my parents felt something a bit off with me. My mom tried alots of stuff with me an tried to get me on track, it was suspected I had autism an some other issues but I was a pretty healthy baby otherwise.

Throughout school (growing up)

During this time, I was in a out of school before my mom decidedto homeschool me to help me better an see what all I needed help with in life.. I spent a lot of my young life being “assessed“ and going through therapy an my mom did what she thought was best to help me an she did alot of research. My mom was my biggest support an biggest advocate. There was a time where we thought that I was a bit high functioning for a lot of the special needs kids I was in even though the mainstream learning was still really hard for me. In middle an highschool alot of my disorder got worse or came about and that was really hard for me cause i could do normal teenage things, I was living koving around alot which was always fun to me minus that new doctors every time an new therapists i had to re teach. I was in speech and language therapy, occupational therapy, physical therapy and more, autism support. It was thought I have Neuro disability such as intellectual disability and autism spectrum disorders which i already mentioned. It was around age 9 I began having occasional dizziness. And then I progressed with my chronic illnesses and headaches vomiting that would be aggressive and severe and debilitating, that would increase my unsteadiness and my FND an paralysis put me in a wheelchair by high school. My chronic that would easily be provoked by things. These episodes went on and off and then became very frequent, severe and happening about (up to daily) that would last a long time in a day(hours) I had multiple MRI’s done and many tests and specialists, doctors later said everything was “ normal “ They refused to do much more then the basics again and again, for my aggressive attacks/episodes because there wasn’t evidence according to them that I have someing that my brain was activly controlled. While it didn’t appear I had this at the time, it didn’t make sense to me because my none other family members with the same issues.

With my aggressive episodes we just had to push through. I’d get hot, sweaty, weak and off balance and would have heart palpitations. Many eventually thought I just had panic disorder or anxiety. I had to wear a 24 hour heart monitor which didn’t provide any answers other then a small heart extra beat ❤. There were lots of test ran but none that could provide answers very well. I had an “episode” during the a egg test in which they had to end early. It wasn't positive for anything but they atleast caught something,. My body as never been a fan of gravity. upright position I’d have rapid heart rhythm and a lower blood pressure. I had a few fainting spells growing up but were infrequent and still are very infrequently accuring , ive had a few to alot of non epileptic seizure as well that are at random.

By 2019

By year 2019 at age 17, I was suspected to have FND based only on clinical signs and symptoms but was never a definite diagnosis till then. I was then finally prescribed the medication for my different things going on. Still many didn’t know what to do or how to help or then I moved again an now after several years im finally have a good care team pur together that are trying to treat me. by prolonged episodes , poor balance and coordination, among others. in between these episodes I can seem mostly normal idh.

So I've had Symptoms of this condition for a long time but it didn't get Bad Till April last year.

on April 22 2019

I had woke up like any other day an was talking with my mom an I got up to walk to the kitchen an lost all feeling an moment from the waist down . so at 9 am yesterday morning I suddenly lost all feeling and use of my legs everything from the hips down My dad took me to the er ( it was a disaster after 7 hrs and they transferred her to the children's hospital) ....it was at 4 am in the morning on the 23rd. and admitted me an they assigned me a team of docs that have been amazing they are working together for more test , ideas ect ... so far nothing has given us any anserws and there has been no change or improvement in my condition yet. . . They did say that they would be keeping her untill they figure out what is causing the problem and come up with a plan to fix what they find ..... my room is nice and has a good view , pt gave me a wheelchair to help her get outta bed alittle. this gotta worse from there I started having tremors an full body spasms an was really tired. dearing the fully body spasms sometimes I could see or my hearing would lessen. they kept me for a week an at the end they had finally diagnosed me with FND/FMD. I spent awhile in the wheelchair not being able to feel then learning how to walk again then I've been in an out since. the tremors an spasms are less then they were last year. I still have tremors an spasms, my legs still buckle an I lose feeling or movement. I've also now got the where my chest muscle spasms. but every Day is different.

when I was younger they couldn't explain why I could feel my leg at times or why it gave out an other stuff. but it's nice to finally have a diagnoses.

In 2020 I was diagnosed with HSD

🦓🖤🦓

Hi everyone! My name is Kate, I am 19, and I live in lower ILLINOIS! My journey to diagnosis was long and frustrating at times, but after months an years of testing, I was diagnosed with FND recently in April 2019 when I was 17, and Hypermobile Ehlers Danlos Syndrome in of 2020 shortly after. I am still have some things to be tested for, but I'm thankful we got the ball rolling! I am a former sports player and was a part of a pre-professional company up until I quit due to my conditions worsening. I love material arts very much, and miss it every day. My conditions are very disabling, and I rely on a wheelchair part time to keep me from passing out an do to paralysis, and to protect my joints from dislocating. I am also careful to not get overheated, as that is a huge trigger for me. Even though I am in pain every moment, I am still determined to not let my illness stop me from leading a joyful life. I recently re launched a blog . I'd love for you to join us in raising awareness about chronic illnesses like EDS, and to bring hope to the world! If there's one thing I want to say to every chronic illness warrior. 🦓🖤💪🏻🦓

My symptoms have changed a bit since then, I use a rollator when I’m out and about and do a lot of walking and sometimes a wheelchair (especially during severe periods of my HSD and FND) whereas my symptoms were at one time obviously episodic, they seem more widespread with some difficulty telling if I have an episode or not or an exacerbation. Though at times I still have more severe symptoms other times then others. For example I can be unsteady when they used to be .

THIS IS MY STORY!!

It wasn’t an easy one (and some say I’m lucky )

#neurodiversity #intellectualdisability #fndusa #functionalneurologicaldisorderawareness #eds #heds #hsd #converiondisorder #neurodevelopmentaldisorders #InvisibleDisability #raredisease #rarediseaseawareness #RareDiseaseDay2021