Re: Hemophagocytic Lymphohistiocytosis (HLH)

Thank you Twiz. No we had never heard of it until today either. It sounds an awful disease. It took four weeks of tests before they came up with the diagnosis.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Hi Twiz. No we had never heard of it either. It took the hospital four weeks to diagnose it. She is having Chemo now with a possibility of bone marrow if they can find the right donor.

Oops! Sent that twice. Oh well I'm a bit numb at the moment. X

Re: Hemophagocytic Lymphohistiocytosis (HLH)

EZ What a worrying time for you and your family. I don't know if this link will help but thought it may be worth a look.
http://rarediseases.info.nih.gov/gar...is/resources/1
The more information you have on the subject will help enable you to cope better with the situation. Sending best wishes and hugs your way xx

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Hey EZ.
I'm sure all the above is a big help, and gives you somewhere to go. I also want to add a link that may be of some help.
I have a rare medical condition, and upon finding out about it, myself and the family were all stunned.
Fast forward a bit, and I can tell you what helped a lot was a support group that I found online. These people had been there, seen what could happen, etc. So they could relate to most of what was going on - the good and the bad.
So with that in mind, I had a wee search, and came up with this support group for HLH.

http://www.hlhsupport.org/

Not knowing anything about it, I can't tell you if it's any good or not, but hopefully will help to some degree.
I wish your family member, and all your family, all the best for the upcoming months. Being there for each other is just as valuable as any treatment.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

So sorry to hear this news EZ - very good of Amanda to inform you ....
Sincere good wishes for progress - keep positive, I know its hard x

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Bloody 'ell matey, I couldn't even get my tongue around it to pronounce it, but wishing your relative all the best. I used to be a blood donor and would willingly donate bone marrow had we been a match, but I don't think any of the medical profession would approve as I have been prescribed long term Warfarin and I don't think your relative would benefit.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Hi EZ ... so sorry to hear this bad news ... best wishes to you and your family and especially to the young lady concerned

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Many thanks one and all for your kind comments. We were there visiting today and it was so upsetting to see her so ill. She had a bone marrow biopsy and a CT scan today but no results yet. Unfortunately she googled HLH herself yesterday so now realises how seriously ill she is. We are all praying that the disease is in its primary stage and not the secondary.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

How terrible to find that your beloved family member has such a rare and serious illness EZ Rider....

Each step has to be taken with love and support.

My thoughts are with you.

Re: Hemophagocytic Lymphohistiocytosis (HLH)

Thank you so much Pats. I must make it plain that Ruby is not one of my immediate family. She is the daughter of my eldest son's wife's sister...yes that's it..i think! Ever since she could speak she has called me Grandad so I feel as though she is one of mine.