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Fri Jun 15, 2012, 09:14 PM

Now everyone's asking, "What is MDS?"

via email from AAMDS.

"It’s likely you have now heard that a well-known television personality – Robin Roberts, anchor of Good Morning America – has publicly announced that she has been diagnosed with MDS. The news is on TV, in the papers, Web sites, blogs, and coursing through social media.

...At AAMDISIF, we know that even though the diagnosis of a well-known person can call extra attention to a rare disease, after a while the story subsides and fades from prominence. We encourage you to take this current opportunity to bring up the story to others, in person and online – and be ready to refer them to www.AAMDS.org..."

http://www.aamds.org/mds-news

"What Can You Do?

•Donate blood
•Donate platelets
•Sign up for the bone marrow registry
•More ways to get involved"

http://www.aamds.org/about/MDS/treatment/transplantation

A little over two years ago my husband was diagnosed with MDS which rapidly progressed to AML and he had a stem cell transplant in October of 2010.

Rep. Matsui, whose husband died of complications from MDS, has been lobbying for increased research funding.
https://www.aamds.org/sites/default/files/MatsuiElectronicDearColleague.pdf

"Dear Colleague:

Please join me in sending the attached letter to the House Appropriations Subcommittee on Defense in support of additional programmatic funding for research into bone marrow failure disorders. Since 2008, the Bone Marrow Failure Disease Research Program at the Department of Defense has funded cutting edge research into myelodysplastic syndromes (MDS), aplastic anemia, and paroxysmal nocturnal hemoglobinuria (PNH), all of which occur when stem cells inside the bone marrow stop making enough healthy blood cells. In the past five fiscal years, Congress has appropriated nearly $17 million for research into bone marrow failure diseases. This research is increasingly important to the U.S. Armed Services, as recent data indicate that service personnel who were deployed to Iraq or Afghanistan may have been exposed to environmental factors associated with bone marrow failure diseases.

Bone marrow failure diseases can strike any person of any age, of any gender and any race, in any neighborhood, anywhere in the world. They are life-threatening diseases that currently affect tens of thousands of men, women, and children every year. By studying Armed Forces personnel who have been diagnosed with these conditions, we can gain a much better understanding not only of what causes bone marrow failure diseases, but also of how to protect our troops - and the general public - in the future.

We are committed to finding cures for these tragic illnesses, and we request your support to ensure that the fiscal year 2013 Defense Department appropriations bill provides a continuation of funding for the Bone Marrow Failure Disease Research Program..."



6 replies, 1642 views

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Arrow 6 replies Author Time Post
Reply Now everyone's asking, "What is MDS?" (Original post)
slipslidingaway Jun 2012 OP
villager Jun 2012 #1
slipslidingaway Jun 2012 #2
villager Jun 2012 #4
slipslidingaway Jun 2012 #6
Th1onein Jun 2012 #3
villager Jun 2012 #5

Response to slipslidingaway (Original post)

Fri Jun 15, 2012, 09:49 PM

1. Sadly, all too familiar with it in my household -- my dad was diagnosed with it last summer

It's been a roller coaster since, but he seems "stable" now, at least...

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Response to villager (Reply #1)

Fri Jun 15, 2012, 10:35 PM

2. Sorry that you are personally familiar with MDS ...

and my hope is that your father remains stable for a long time!!!

This drug has helped some who are in the lower risk category.

Thalidomide Effective In Low-Risk MDS Patients
http://www.mdsbeacon.com/news/2009/06/12/efficacy-of-thalidomide-as-possible-treatment-for-mds-eha-2009/

My husband was in the high risk category and approaching the cut off age for a myeloablative transplant, so a transplant was the next step once he achieved remission, even more so once it transformed to AML.

They are doing mini-transplants for those who cannot have a more rigorous conditioning treatment.

Yes it is a roller coaster, wishing you and family well









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Response to slipslidingaway (Reply #2)

Sun Jun 17, 2012, 02:58 AM

4. Thanks SSA!

My dad's a member of Kaiser, and has had a couple transfusions already -- but not sure about other "alternative" therapies yet...

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Response to villager (Reply #4)

Sun Jun 17, 2012, 11:51 AM

6. Some people can remain stable and in a watch and wait mode for years ...

and I hope that is what happens with your Dad as they are always making advances with research.

You're welcome and enjoy your Father's Day





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Response to villager (Reply #1)

Fri Jun 15, 2012, 11:10 PM

3. Did your dad get treated for another type of cancer earlier in his life?

With chemo and/or radiation?

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Response to Th1onein (Reply #3)

Sun Jun 17, 2012, 02:59 AM

5. No he didn't! Nor was he exposed to benzene in his mostly office-bound work life...

...unless he was exposed to something in the Army, during the Korean War (he served state side)...

Or it's just general "environmental malaise..."

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