#48

Aplastic Anemia & MDS International Foundation | answers. support ...

Resource for patient assistance and emotional support; includes educational materials, medical information, and research.

Link: aamds.org

  • Changing the world by building awareness: check out Emma's story!

    A Mother and Daughter Awareness-Building Team Get to Work | Aplastic Anemia and

    aamds.org 18 Sep '17, 3pm

    “Emma was active in raising awareness for bone marrow failure even before her arrival at NIH.” – Lydia Seiders I knew from prior experience with advocacy for other Illnesses, that “t-shirt advocacy” really works – they are great conversation starters. After I had read and re-read AAMD...

  • Stories of Hope | Aplastic Anemia and

    aamds.org 08 Sep '17, 3pm

    29-year-old Ricky Smith, Jr. has had bone marrow failure disease for half of his life, beginning with aplastic anemia at the age of 14, followed by PNH when he was 23. It took doctors a year to get Ricky’s aplastic anemia under control. His wife Reyneisha puts it this way. “Not only d...

  • For Monday, here's a story of hope, back from MDS!

    Jane Massey’s Story | Aplastic Anemia and MDS

    aamds.org 04 Sep '17, 2pm

    Although it sounds strange. I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram. I opted for a bi-lateral mastectomy and then had 33 radi...

  • Brandi Lewis | Aplastic Anemia and

    aamds.org 08 Sep '17, 3pm

    An AAMDSIF travel assistance grant made it possible for the Lewis family to go to New York for what turned out to be a pivotal doctor’s appointment. The family also attended our annual PNH/March for Marrow walk in New York, where Dr. Araten gives a presentation at the pre-event breakf...

  • Shauna McMillan remakes her life after the challenging diagnosis of MDS (Myelodysplastic syndromes)

    Shauna McMillan - Alaska Resident Returns to North Carolina for Treatment, Family, and a New Career | Aplastic Anemia and

    aamds.org 21 Aug '17, 1pm

    I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus. I was diagnosed in February of 2015 at age 38, however my health str...

  • Graft vs. Host Disease (GVHD) | Aplastic Anemia and

    aamds.org 03 Aug '17, 6pm

    There are two types of GVHD that can range from mild to life-threatening: Acute GVHD most commonly occurs within the first 100 days after transplant and, while it can affect any part of the body, it typically affects the patient’s skin, liver, stomach and intestines. Chronic GVHD happ...

  • Did you miss Briana's story? Check it out here:

    Briana Donis | Aplastic Anemia and

    aamds.org 30 Jul '17, 1am

    Optimism can’t be taught, but Briana had it in abundance. It served her well during the most stressful time of her young life. “I started to think oh, well, this is how it's supposed to be, and so that's the mentality that I stuck with.” She began by taking life day by day, “just ridi...

  • PACCT+ Patient Group Meets and Learns Together | Aplastic Anemia and

    aamds.org 11 Jul '17, 6pm

    On June 17, the AAMDSIF Patient Advisory Council on Clinical Trials (PACCT+) members met in Arlington, Virginia for the second orientation seminar, meeting fellow committee members and learning from two experts about clinical trial design and the state of current MDS research. By thei...

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