Friday 28 February was Rare Disease Day. There are more than 100 different types of blood cancer, but some are rarer than others. For example, Hairy cell leukaemia, Large granular lymphocytic leukaemia (LGLL) or Peripheral T-cell lymphoma – there are many more!
If you’ve been diagnosed with a rare blood cancer, it might be harder to find others who have it too or who truly understand what you’re going through.
So, we want to open this space on the forum for anyone who has a rare diagnosis to share their experiences, connect and support one another.
Our support services nurses will also be on hand to answer any questions.
Diagnosed with Myelodysplastic syndrome (MDS) in August 2024. Very low neutrophil and white blood count.
Have been lucky and not picked up any infections, just feeling fatigued. Need a stem cell transplant but currently no matches.
Struggle to find any information most is about low hb or platelets.
My husband has acute Chronic Myeloid Leukaemia (aCML). One in one million newly diagnosed have this rare form. I’ve not been able to locate anyone thus far with same diagnosis. My husband is on day 3 of chemo in preparation for his stem cell transplant on 5th March.
Hi @Sarah1 I am copying details of Myelodysplastic syndrome (MDS) UK patient support. Home | MDS UK Patient Support Group
and don’t forget the Blood Cancer UK support line on 0808 2080 888.
I hope you find a transplant match soon.
Please keep on really looking after yourself and posting
Hi @Feederupper great to hear from you again and I will be thinking of you both on 5 March
Please do look after yourself as well as you do your husband, you as a wife/carer are one of the unsung heroes in my book.
Please do keep posting how you are both doing
I have a very rare disease. Waldenstrom. I had a very quick diagnosis and was immediately admitted and given 3 units of blood. I had 6 rounds of very gentle chemo here in Portugal where i have been treated very well. Blood count is in normal range but i have a lot of work to do to get my muscles strong again.
Hello…
I apparently have a rare leukaemia… I have T-cell Large Granular Lymphocytic Leukaemia…
I have yet to find anyone with the exact same type… Iam on watch and wait, active monitoring… No medication as yet…To say that the diagnosis was a shock is an understatement… I was Diagnosed 18th Sept 2024… I am still struggling to come to terms with it… Thankfully my local hospice has been a godsend.
The one I have,Mycosis Fungoides ,is rare and one of the sub types of the Peripheral T Cell Lymphomas which are split into two main types Nodal and Extra Nodal.Strangely,it being a small world,my sister had a friend in the USA from a place called Sugarland ,Texas(somewhere near Houston I believe)who went on to develop Stage 4A Mycosis Fungoides T Cell Lymphoma and sadly he died from it about 2 years ago.I have met someone who had Angioblastic T Cell Lymphoma too but that was at the hospital at the rare Lymphoma Clinic so not too unexpected there!