Diagnosed with CIDP and under 30?


I was diagnosed with CIDP when I was 25 years old and have had it for two years. It’s uncommon for someone so young to be diagnosed with it. It has drastically affected my life and insurance has been a nightmare. Is there anyone that can relate and who is young like me? What has your experience been like?

Hi Scorpo, I just recategorized your discussion from “Uncategorized” to “General CIDP Discussion” so more people will see it! @hjhuggy has a young son, and I think I’ve sent her the names of a few young members. @hjhuggy, can you remember their usernames? I’m having trouble finding them in this new format!

Hey, I’m new here but I am 18 with CIDP. I was diagnosed about a year ago. I had many doctors each telling me something different. They all agreed that what I had was “A rare version of a rare disease.” I had lots of tests done and they still aren’t exactly sure what it is, but CIDP fits closest. Anyways, I get IVIG treatments for 2 days every 6 weeks and its been sooo helpful! I can pretty much live a normal life now and its great :smile:

Well I’m 67 and they tell me I’ve had it most of my life, but you should know that even kids 10-12 get this cruddy disease. Mine really flared up in 2005 and hasn’t let up since. Sometimes you just have to say: “Oh Well”.

Scorpo, I’m 28 and started having symptoms the beginning of this year… I just received a confirmed diagnosis on 6/30/16 after seeing three doctors, going to three ERs, seeing two neurologists, two hospitalizations in two different states, and a partridge in a pear tree…so I can relate to the struggles we face as younger patients…I am still waiting on insurance to review all of these records and approve my ivig, but am still so thankful to finally have a diagnosis…it seems to help knowing which rough road I am about to begin…I hope it helps because I have had to take a leave of absence from work because I can’t walk long distances without a walker and must use a cane to walk at all, along with all the other symptoms, and I cannot imagine not being able to go back to work at my age…or not being able to take my laundry to the shared laundry room at my apartment, or drive myself anywhere, or shower without using a shower chair…it really makes you reevaluate the life you imagined you would have by the time you turn 30 for sure. …I hope you are doing well and receiving the support you need from family and friends

I was diagnosed 13 years ago when I was 30, I was told when I was finally diagnosed that I had CIDP for about 15 years already. All the Drs etc. that I saw including the neurologist who diagnosed me, who tested me for MS first and later apologised, told me it was all psychological.

hey there, yes I was diagnosed by CIDP at the age of 25, now I am 28! you can find young people with IDP on instagram! don’t worry you are not alone :wink:

That is so frustrating, I know! My first Neurologist thought that mine (GBS) was psychological too since my PCP said I had anxiety in my past. It really hurt having that in my record trying to move forward for help. I wonder how many people suffer from conditions like this then suffer again from the lack of support and care from their physicians. Symptoms for these conditions are so brutal, strange and unbelievable at times (unless you are experiencing them). And can’t be seen. If your tests and labs don’t fit the mold at the right time then it is a difficult diagnosis. I get that but to be dismissed when you are living with this is tough. Glad that you finally got the help and an apology! Good luck to you moving forward!

Hi! I’m 28 yrs old. From what I can remember it (CIDP) all started in 2012 for me but did not receive a correct diagnose and treatment until last year. I can relate to all that it implies being young and having to deal with this condition. I’m glad to find this groups where we can share our experiences and know that we’re not alone. I think these discussions are really important in order to share what works for us and what doesn’t.

Hi! I’m 16 and was diagnosed when I was 14… I am a ‘mystery case’, named by my doctor, and have normal GBS symptoms but recurring relapses, likely to continue for a long time. I also know of another girl in my ward who has CIDP, so maybe this isn’t as uncommon in young patients as people think?