Contacts in London - 40s/50s

Post here to make contact with others in specific regions of the UK.

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Contacts in London - 40s/50s

Postby johnevason » 04 Mar 2016 12:55

I was diagnosed with MDS a year ago. I am 47 and currently have no symptoms. Looking for contacts with MDS in similar age bracket. Sometimes it would be helpful to share experiences of dealing with diagnosis.
Posts: 11
Joined: 13 Nov 2014 11:30

Re: Contacts in London - 40s/50s

Postby NW1958 » 15 Mar 2016 13:17

Hi John
I am aged 57 and am an MDS patient, on azacitidine with a view to have a stem cell tranplant in near future.

In early October 2014, I had a routine blood test because I had developed acute Psoriasis and was feeling generally washed-out and suffering night sweats. Within two weeks, I was sat with my wife in the Haematology Department of our local hospital in Exeter feeling pretty scared when the initials MDS were mentioned in connection with my own symptoms.

I am now on my journey towards an SCT with 2 potential stranger donors identified by Kings, London. I have had 6 cycles of Azacitidine.

Thanks to a very supportive employer. I am working part-time [about 50%] and have changed roles. My colleagues have been very understanding and have tried to understand my amateurish explanation of MDS.

I do have a 'story' published on the Forum under News / Patients Stories.

Male, Aged 56, Still working, Recent diagnosis, Based nr Exeter
Posts: 11
Joined: 14 Jul 2012 13:05

Re: Contacts in London - 40s/50s

Postby Kes » 03 Apr 2016 18:53


I'm in London. I'm now 51 and was diagnosed aged 35. Are you aware of the patient support group meetings? That can be a good way of making contact with other local people. Also there is a Facebook page which again is a great source of company for those of us that share the road less traveled.

Hope you make some connections.

Take care

[color=#0000FF]I was diagnosed initially with RA. Now I'm told it RCMD with hypocellular marrow. It seems I also have a big autoimmune component to my MDS with lots of accompanied joint pain[/color]

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