New member

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Joined: 09 Oct 2018 09:06

New member

Post by ALOX14 » 13 Oct 2018 18:05

Hi everyone,
I am Amanda, I'm 22 years old from Surrey, I am currently studying for a masters and just moved away from home for the first time. I was diagnosed with hypoplastic MDS/ severe aplastic aneamia about 2 years now, when first emitted all my levels were very low. Luckily I've responded to ciclosporin so my levels remained stable.

I am currently a quarter of the way through being weened off the meds, with a year and a half to go. I have dealt with the medication well physically, but every doctors appointment I get very anxious and stressed, my mental health has definitely been affected since being diagnosed.
How do people deal with the mental problems that arise with the diagnosis?
Thanks in advance
Amanda :D
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Joined: 20 Feb 2018 16:21

Re: New member

Post by AWOX15 » 13 Oct 2018 19:53

Hi Amanda
I read you’re message and then moved onto something else, because I didn’t know how to answer. That was wrong, but I still don’t know how to answer.
So young ,and MDS does affect us all on this site in varying degrees as you will discover.
I wonder if you have been in contact with Sophie at Kings College Hospital?
Sophie Wintrich, CEO MDS UK Patient Support Group, who I’m sure will be able to offer you help and guidance.
Support will be there for you.
Good luck.
Regards Alan
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Joined: 20 Aug 2018 14:00

Re: New member

Post by DTUB10 » 16 Oct 2018 22:38

Have you tried speaking to Macmillan.They can help with counselling and other therapies.
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
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Joined: 07 Mar 2013 11:22

Re: New member

Post by christina » 21 Oct 2018 20:11

Hi Amanda yes I agree Sophie is the person to chat to, so many of us are so much older than you and as you know we are all so different. I do wish you all the very best and am sure you will find out so much from this site and some of its members Christina
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