My rare disease caused my kidney failure
I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT. I'm still learning about it but I'm on three different pain medications for it as it causes me a lot of trouble but I also have a kidney transplant now.
I’m so glad you received a transplant! How are you managing after transplant? Personally, It’s been really interesting seeing more awareness around CMT after I learned about it in the late 2000s from my ex father in law’s experience with it! How are you doing with it, yourself?
thank you, dealing with my transpalnt has been hard especially with the cmt I feel like it got worse with the amount of medication I’m on tbh but I’ve started swimming to see how I get on as that was what I was advices I can definitely see how that would be the case. It’s such a hard trade off sometimes whenever trying to balance multiple conditions while trying to treat one condition that is required. Swimming sounds like a great idea with a lot of benefits! Have you noticed any changes yet?
, wow, that's a lot to deal with! Knowledge is power, do you find that you have an easier time dealing with your health, and your healthcare providers? - Warmly, Donna (team member) I’m from London, UK and as thankful as in for those I’ve met on my journey who have helped me get back to semi-normal. I do believe my health care provider is not great I’ve been in too many situations where my life has been in danger because of their convenience which is an awful feeling. , how much choice do you have within the NHS? It is unconscionable that you should ever have to feel in jeopardy because of your provider's actions. I am glad, though, that you've found people to be your village and share support. I hope you count this community among your village. - Warmly, Donna (Team member)
