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Reaching out

Tagged: MDS Centers of Excellence

This topic has 2 replies, 3 voices, and was last updated 7 years, 10 months ago by Deborah.

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April 25, 2016 at 4:17 pm #29686

nativitie miller
Participant

I have recently been diagnosed with MDS, i am just in the beginning stages of it. I want to reach out talk to people that have/had it.

May 5, 2016 at 2:26 pm #29726
Anonymous
Inactive
I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion if you have not already done so. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to me at ahassan@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact me at 1-800-637-0839 Ext. 210.

Kind regards, Audrey
- This reply was modified 7 years, 11 months ago by .
June 5, 2016 at 11:50 pm #29896

Deborah
Participant

I would like to second that recommendation: go to an MDS Center for Excellence!
I stayed with the oncologist that diagnosed me for 3 years. I went to an MDS Center of Excellence when I was so sick I could not walk. It was worth the trip. They knew what to do and how to do it efficiently and effectively. I went to UCSD, San Diego, to get myself on the right path to living again. My home is in Denver, so I have transferred to the Center here in Colorado,CU, even though it isn’t particularly convenient for me. Worth it!
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