- CASE FILE
Trichorhinophalangeal Syndrome it’s extremely painful.It hurts the joints & muscle all over the body, Doctors don’t seem to know what to do
ABOUT THIS CASE FILE
I have Trichorhinophalangeal Syndrome. Every Doctor I go to says sorry we don’t know what to do for you, I have Doctors looking up my syndrome cause they don’t know what it is. I’ve had two hip surgeries cause from Leg Perthese disease from my Syndrome, as I get older I get in so much more pain & I’ve had X-rays that show up nothing so Doctors don’t know what to do to help. I’m on a lot of pain medicine to help but I’m still in an extreme amount of pain I currently walk with a Cain to help cause it’s to much to walk. I just want to be able to know what is causing me so much pain & how can I manage it. So much of my life I feel like I’m making something up because nobody knows what this Syndrome is, I didn’t finish school cause I wasn’t healthy enough to go & because this Syndrome effects my ability to retain information, I’ve never had a Date or Boyfriend because I’m to sick to go out & I’m 29 years old, I go to the store or the Doctors & I’m sick the rest of the week, I pop, crack, & shift so much that most days I debate going to the ER cause my bones don’t feel like there in the right place which is excruciating but I don’t end up going because I know I’ll just hear “There’s nothing we can do” or “I don’t know what’s causing this” so I suffer it out. I also have to tell family & friends that I can’t make plans cause I don’t know how I’ll be feeling that day.
This Syndrome is so rare I was told I’m the only one in the state of Vermont who has this & sometimes when I tell people I’m noting feeling good because my Syndrome is bothering me they look at me like they don’t believe me or I’m just making an excuse, I don’t believe there is a cure for this but I just want to understand what is causing all the pain & maybe how I can control the pain better cause pain meds are not really cutting it.