Rare Disease?

I've been ill for a while now (over a month) and after being convinced I had Hondkin's Lymphoma (a lymphatic cancer), as I matched all the characteristics and also the Dr's were suggesting it from the start. But I've been spared of cancer, and been diagnosed with a very rare disease.

The symptoms are typical of Hodgkin's, there is no cure for what I have and no real treatment. All I was told by the consultant is that it is rare, cause unknown, no cure and that it will eventually go on it's own.

I have done my own research, but there's not much information out there because there's only a few reported cases of this disease.

I just wanted to know if anybody had been diagnosed with a rare disease too? Maybe you have a close friend/relative who has been affected?

I would like to know what you went through, and how you dealt with it. I'm finding it quite difficult because it is such a rare disease, i feel quite vulnerable and sometimes I think anything could happen tomorrow.

It's hard not to feel depressed because I've had to stop studying, I can't work right now. I was so motivated, and was doing so well this year. This semester I was averaging a first, and i'm in my final year, was looking forward to graduating in November. But now I've been told my outstanding assingments and exams will be deferred in August, to give me time. But my GP has said he expects me to be unwell for about 6 months. This means, realistically i can try to defer it all and re-do my year without it being a 're-sit' year as nothing will be capped to 40%...but it means all the work I have done this year (i have not failed anything, and all marks are between 60%-80%), will be effectively void.

Is there any advice that can be offered?

Either with dealing with being diagnosed with a rare illness, or the silly university system.

I mean, they are willing to reschedule my assignment deadlines and exams but only to august. I dont see why I can't justcome back next year (if I'm to be ill as the GP says) and only sit what I have missed out first time round? Will i be able to appeal their decision?

Thanks for any help, thoughts on this issue.

Reply 1

sweet_fluffy_nuke

So what is the rare disease ?
Not myalgic encephalitis, I hope. :rolleyes:

Reply 2

FadedJade

Is that supposed to be funny?

Reply 3

RishiC

lessthanthree

i thought the diseases closest to the symptoms were Non-Hodgkin's Lymphoma or Graft-versus-Host disease ...or actualy just flu, so have you had a transplant?

missing out on your year is quite rubbish, but your health is foremost. will it take you out for long?

Yes flu was on the table to begin with, but after 7 days symptoms got worse with lymph node's being enlarged also. They suspected Hodgkin's for a while.

I have Kikuchi's disease. There are reports that in some cases patients are misdiagnosed with Lymphoma, and some patients given chemo :frown:

I'm out for a few months. It's a self-limiting disease, so depends on when is able to supress the symptoms. I'm hoping to be better by August to sit exams etc with deferrals.