Please post here your experiences of MDS as a patient, carer, family or friend

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Posts: 2
Joined: 14 Jun 2013 19:12


Post by charley40 » 18 Jun 2013 07:05

So we have since found out that my dad has been suffering from mds since 2010.

They are now saying that his red cells are scarring inside and out of his bone marrow. No meds as yet just regular top ups of blood and watch and wait.

Can anyone tell me what this now means?

Posts: 249
Joined: 20 Nov 2008 14:05

Re: dad

Post by sophie » 18 Jun 2013 12:45

Dear Charley,
please do call me on the main MDS UK line 0207 733 7558.
We will help you better understand what physicians have told you and your Dad.
It is extremely difficult for any other patients to comment or advise in any way based on a tiny bit of information.
We will help you ask the right questions, so that you are better equipped to discuss your Dad's MDS with other patients.
Every patient is different - so it is very important to get detailed information fron the physicians.
I also want to discuss with you if your Dad would benefit from a referral to a Centre of Excellence.

As a rule - please always contact us when you first use this online discussion forum.
This gives us the opportunity to:
- send you a full information pack - based on your specific needs
- register your details on our database - to send you future newsletter and news
- help you understand and interpret what you have neen told by physicians
- advise on a potential referral to a centre of excellence
- explain the use of this online discussion forum - so you can use it for patient to patient support - rather than getting other patients to try and interpret bits of information - which can lead to misinterpretation often

This is what we are here for.
Everyone - don't hesitate to call please - you will be much better equipped to understand information and discuss with others.

Charley - I look forward to talk to you soon.
Warmest regards to you and your Dad.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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