Chorea

#RareDisease

Fever. I did have it as a child.
#RareDisease

#i wonder of any one out there struggles with Sydenham's Chorea. I've got that along with EDS and bronchiestasis. I'd like to hear how others cope. (I actually the my tablet recently---certainly not intentional, just the chorea doing its' thing.)

my bipolar is raging today and I'm having suicidal ideations. We just learned my husband has Huntington's Chorea which is a terminal illness. I'm not taking it well at all but now the hard part is how do I tell my 4 young children their dad is going to die. #SuicidalIdeation #HuntingtonsDisease

#RareDisease My dad has it. My grandma and cousin both passed away from it and all my siblings and I have a 50% chance of also having it. It's been really bonding for us as a family, and really hard to navigate with other people.

My name is Brittany and I am from and live in Indiana. I was born with a genetic bone disease, FibrousDysplasia. I wasn’t diagnosed until I was 13. I had a tooth pulled and because the swelling never went down I had to get a biopsy, in which the diagnosis followed. My pain started shortly after, all in my head only at the time. By the age of 15, my pain was disabling and was taken put of school. After a bunch of doctors and tests, I was then diagnosed with a brain tumor covering my entire pituitary gland. Surgery was needed immediately. After the initial removal surgery, the pain was worse and I wasn’t able to even move my head. I remember telling my mom I was dying and was not ok. After being sent home a week later to celebrate my 16th birthday, it got even worse. I woke the next day to a bed soaken wet, was all spinal fluid. I was rushed back in and prepped for another surgery, this time to put tissue from my thigh up there to stop the leak. Following that surgery I knew I was ok. I was then diagnosed with McCuneAlbrightSyndrome, another form of my bone disease, along with numerous other diagnoses. To beat it all, I then started having pain in my jaw on top of the headaches that never stopped even after surgery. Three months later I was prepped for my first surgery on my jaw, to shave down the bone. The pain never stopped. I eventually had even more surgeries, including one to remove a bone tumor on my jaw. In 2004, I had got an infection in my jaw following a surgery and it led to me having an emergency surgery. It went horrible and a doctor had ignored protocol and left me with a very low sodium, life threatening. Afterwards, she fixed it in a matter of hours, instead of days that it should of took. This wasn’t known of until I was rushed in one night following episodes of losing control of my entire body. In the er, I was strapped down and sent home with a benadryl reaction. Shortly after was sent home, my endo informed us what had happened afyer surgery so we was sent to a specialist and sat the entire day doing tests. I wasn’t talking or walking on my own at that point and tremors were uncontrollable. By the end of the day I was diagnosed with brain damage, causing 2 conditions(central pontine myelnosis and extra pontine myelnosis) and a movement disorder(chorea). I lost a couple years of my life and endured pain I could never describe. I thankfully can walk and talk normal again but I am left to feel like a child inside and have yet to recover from that. I later was diagnosed with fibromyalgia and TrigeminalNeuralgia. My disease and conditions all do not have a cure so I have continued to have surgeries and will for the rest of my life. The pain has never got better, I suffer 24 7, 365 days a year, always. I have recently lost all my teeth due to my disease and the disfigurement. It has been 3 years and I hope to find help soon so can have my smile back. Everyday is a struggle but everyday is full of hope and joy. I love finding joy in rhe small things. I am blessed to be a co parent of 2 nieces, along with my mother. I now don’t have time to set in bed or to rest daily, they need me. And I think I need them just as much, if not more. I have become an advocate and hope to use my pain and voice to help others see the light and joy everyday and always smiling through it!

#RareDisease #ChronicPain #ChronicIllness #TrigeminalNeuralgia #McCuneAlbrightSyndrome #FibrousDysplasia