MOM with MDS -

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MOM with MDS -

Post by cheflazo » 23 Jun 2015 05:08

It's been a little over a year since our family received news that Mom was diagnosed with a rare blood disease called Myelodysplastic Syndromes (MDS). If you don't know, MDS are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is often referred to as a “bone marrow failure disorder”.

Through unsuccessful treatments to normalize Moms' blood levels, the day has come to schedule a transplant. Through the grace of God (and a very unselfish human being), Mom has found a bone marrow donor! In less than a month, Mom will under go 2 weeks of radiation & chemotherapy to prepare her body for the transplant. If the doctors at that point find it safe to proceed, the bone marrow transplant will take place.It all seems pretty standard surgical procedure until the doctors start talking about the kind of care necessary after the surgery.

After the surgery Mom is required to move into pre-approved housing within 10 miles of the hospital. Not only does Mom have to relocate but she will also need 107 days of 24-hour care.

As we know, insurance will only help with part of the costs. So, I'm reaching out to you as a friend for support. If it's a message with your kind words or an amount you'd like to donate- everything is greatly appreciated.

In 2012, Robin Roberts announces MDS diagnosis, host of Good Morning America. Click the link to watch the video.

Here is a little more info to help you better understand MDS. It might be helpful to first consider some basics about bone marrow and blood. Low blood cell counts, referred to as cytopenias, are a hallmark feature of MDS and are responsible for some of the symptoms that MDS patients experience — infection, anemia, spontaneous bleeding, or easy bruising. Anemia (low red blood cell counts), neutropenia (low white blood cell counts), and thrombocytopenia (low platelet counts) are the major types of blood cell cytopenias, and are discussed below. In addition to reduced numbers of blood cells, the mature blood cells circulating in the blood may not function properly because of dysplasia. The formal definition of dysplasia is the abnormal shape and appearance, or morphology, of a cell. The prefix myelo- is from the Greek and it means marrow; so myelodysplasia refers to the abnormal shape and appearance — or morphology — of the mature blood cells. Syndromes comes from the Greek and means a set of symptoms that occur together.

Failure of the bone marrow to produce mature healthy cells is a gradual process, and therefore MDS is not necessarily a terminal disease. Some patients do succumb to the direct effects of the disease: reduced blood cell and/or reduced platelet counts may be accompanied by the loss of the body’s ability to fight infections and control bleeding. In addition, for roughly 30% of the patients diagnosed with MDS, this type of bone marrow failure syndrome will progress to acute myeloid leukemia (AML).

Thank you for taking the time to read this. Much Love
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Joined: 20 Nov 2008 14:05

Re: MOM with MDS -

Post by sophie » 29 Jun 2015 12:55

Dear Cheflazo,
thanks for sharing your Mum's situation and story with us.
We hope all will go well with the transplant and send you our best wishes.

We are of course aware of the financial issues faced by patients in the USA, as the insurance system is very different from the UK, where we have the NHS - National Health Service.
In that sense, we in the UK are very lucky that the treatments - if approved by our government - is free of charge.
However - we also face the issues of a reduced income if someone is unable to work for a while - due to the illness.

It may be worth adding more details to your message about how much your Mum's insurance will pay - and for what - and how much you are supposed to pay yourself. Maybe also scanning in the bills - to show people it is a genuine claim.
This may help people understand a bit better.

I hope you will find some generous donors to help.
All the best,
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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