http://www.mdspatientsupport.org.uk/forum

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.

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.

Nigel

Hi

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

Kes