Newly diagnosed

[BMBA5]

Hi,
My partner has just been diagnosed but I don't know what type I know its low risk at the moment, but his neutrophils are always really low, and hes always seems ill. so that's why he was sent for a bone marrow biopsy. Im sorry but I really don't know much about it, as he won't talk to me, I know he's scared, ( although he says he isn't) they have said life expectancy is 5.5yrs. Does this mean it can't be cured, im going out of my mind here, im scared and don't know where to turn to. I've Googled it but to be honest its all do confusing. Any advice or help I would really appreciate. Thank you

[Devjon]

Hello BMBA5,
Sorry to hear that news, it must have come as a shock to both of you. I would say don't go by what Google says, the information isn't reliable and often outdated. I would recommend phoning MDS Patient support, they are the experts and are a wonderful team of people. They'll be far more knowledgeable and supportive. There may well be a local support group depending where you live, once again, please phone Patient support.

Very Best wishes
Kevin ( an MDS patient for 10 years )

[chris]

Hello there

I’m so sorry that your partner has received this difficult diagnosis and that you are both feeling so scared. It’s quite understandable when faced with something you haven’t experienced before.

Dr Google really isn’t very helpful with getting useful information and support about rare diseases. My first suggestion is that you take time to read the MDS Patient handbook that I presume you’ve been sent if you’ve recently joined us?

If you still have questions please call our patient helpline.

And check our patient meetings page on the website. We have regular support group meetings where people can share their experiences and concerns.

If you haven’t already joined us, here is the link.

https://mdspatientsupport.org.uk/contac ... ort-group/

Please post again when you have more details about your partner’s exact diagnosis.

With best wishes

Chris