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  1. Dr. Caroline Piatek describes the purpose and use of this new drug approval for some patients with PNH, or Paroxysmal Nocturnal Hemoglobinuria.
    Podcast Episode last updated April 18, 2024.
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  2. 2024 Patient and Family Conference in Los Angeles Recordings will be coming soon! The conference offered special post-transplant sessions. Conference Location: Cooper Auditorium @ City of Hope 1500 E. Duarte Rd Duarte, CA 91010 Parking: Lots HV or G The parking lots are next to the Hope Village Hotel located on the Northwest corner of the City of Hope Campus. (Duarte Rd and Village Rd) Friday...
    Conference Event last updated April 15, 2024.
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  3. Damian was very active when routine blood work showed a problem. But Damian decided that going through treatment would be his mission, even if that meant two transplants. Listen here to his story.
    Podcast Episode last updated April 11, 2024.
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  4. Register now for the 2024 Patient and Family Conference, held in partnership with the University of Chicago. Learn more about your bone marrow failure disease from the experts in the sessions - Register Here. Conference Location: University of Chicago David Rubenstein Forum 1201 E 60th Street Chicago, IL 60637 Parking: Two options: 1. Street...
    Conference Event last updated April 1, 2024.
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  5. Registration is open for the Tampa, FL, Patient and Family Conference.  Please join your peers and bone marrow failure experts for this opportunity! Register Here The event will be held at the Moffitt Cancer Center, Stabile Research Building, 12902 USF Magnolia Dr., Tampa, FL 33612 Parking:  Gold Valet - Paid by AAMDS Gold Garage (free self-parking on level 3)
    Conference Event last updated April 1, 2024.
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  6. The conference will occur over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET. This conference will provide sessions for both adults and children. At the hotel, parking is valet only and paid by AAMDSIF. Conference location - The Inn at Penn @ 3600 Sansome Street Philadelphia, PA 19104
    Conference Event last updated April 1, 2024.
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  7. The time is now to save your seat for the 2024 Patient and Family Conference in Los Angeles! Plan to attend on June 22, 2024, in Seattle, WA, in partnership with Fred Hutchinson Cancer Center - Register Here Conference Location: Fred Hutchinson Cancer Research Center Weintraub Building 1100 Fairview Ave N Seattle, WA 98109 Parking: There is parking in front of the Weintraub...
    Conference Event last updated April 1, 2024.
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  8. On October 14, 2023, Patient and Family Hybrid Conference, in Partnership with Yale Cancer Center, was held in New Haven, CT.  Find recordings or materials from this conference here. Session Recordings: High-Risk MDS
    Conference Event last updated March 15, 2024.
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  9. I was your typical 14 year old teenager who always enjoyed spending time with friends and playing sports. On and off for about two years, my parents would take me to see different doctors to figure out why I had aches and pains, stomach issues and fatigue.   When I tried out for the middle school volleyball team, I remember that every time the ball bounced off my arms it would leave a terrible...
    Patient Chronicle last updated March 7, 2024.
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  10. I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24. I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be. I was 9-...
    Patient Chronicle last updated March 7, 2024.
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  11. Brianna had always been a healthy young girl. We initially noticed some rather minor things with her but did not know at first how serious they were. She had low-grade fevers that went away during the day, but came back in the evening morning and there was her first-ever nosebleed. She missed school for a few days, so we saw her doctor. There is also a clotting disorder that run in our family –...
    Patient Chronicle last updated March 7, 2024.
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  12. My aplastic anemia diagnosis was delivered on September 15, 2015 when I was 20. I was always quite active but was finding that I was fatigued, sleeping a lot, and then my gums started bleeding. I hoped this would stop, but that didn’t happen. Finally, when I was attending a local football game, one side of my body went numb. I went to North Central Baptist hospital, and when the blood work...
    Patient Chronicle last updated March 7, 2024.
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  13. Aplastic anemia is known to most often strike children between ages 6 and 16, and as fate would have it, Liviya’s troubles became evident right on her sixth birthday. Clearly, this had started earlier but we didn’t know about it. The doctors didn’t know what was wrong with her. One possibility was leukemia, but she was later correctly diagnosed with severe aplastic anemia and had the blood counts...
    Patient Chronicle last updated March 7, 2024.
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  14. 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 radiation treatments in early 2016.  I saw my oncologist every month due to my treatment and she ran blood work every...
    Patient Chronicle last updated March 7, 2024.
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  15. In January 2016, my 9 year-old daughter Emma turned yellow. After seeing her regular doctor, we were sent straight to the hospital. They found that her liver enzymes were extremely elevated and sent us to a second hospital. After extensive blood panels and scans, they still couldn’t determine the cause of Emma’s liver inflammation, and so the process to find her a new liver began. We returned...
    Patient Chronicle last updated March 7, 2024.
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  16. Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her bone marrow transplant. It is auspicious for us that she was admitted during Bone Marrow Failure Awareness Week. Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA). Her bone marrow has gone...
    Patient Chronicle last updated March 7, 2024.
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  17. In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders. I’m a nurse and work for a pediatrician, so seeing all this in a short time set off alarms for me. I took Gabby to Dr. Robin White's pediatric...
    Patient Chronicle last updated March 7, 2024.
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  18. 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 struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was...
    Patient Chronicle last updated March 7, 2024.
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  19. In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed. Two weeks and two...
    Patient Chronicle last updated March 7, 2024.
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  20. Part 1 In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe aplastic anemia. Here's what each had to say about what they're doing and how they're feeling. If all goes well, they will be heading back home to San Antonio by February of next year. We’ll be updating their story here each month...
    Patient Chronicle last updated March 7, 2024.
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