The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and other related bone marrow failure diseases. AA&MDSIF provides answers, support and hope to thousands of patients and their families around the world.
AA&MDSIF offers free patient education materials, advice from our patient educator and an Online Learning Center for patients, caregivers, and health professionals. In addition, AA&MDSIF funds grants to further research in finding a cure for aplastic anemia, MDS and PNH.
4330 East West Highway, Suite 230 Bethesda, MD 20814 (800) 747-2820 (301) 279-7202
Brilliant information. A absolute blessing. I’m high risk mds with 20% blasts diagnosed 12/12/23 and given 6 months to live I was placed on Inquovi 5 months ago and all bloods and markers have me in temporary? Remission. If I continue to trend with improving numbers I will have another bone marrow biopsy next month and maybe considered for a transplant after being knocked back in march by the transplant team in consideration to my blood numbers. Fantastic information Many thanks. Phil from Australia. Age 59 with no other health issues. 11/7/24
Hello doctor, Last year, my 25 year-old son was diagnosed with the PNH Clone medical condition, there are seven listed patients with this condition throughout Morocco - including my son. Given the unavailability of the treatment in Morocco, and its highly expensive cost anyway, I'd like to know if there are any associations that help patients who don't have the money to pay for treatment. I'd also like to know if there are any medications that reduce pain, as my son has excruciating and unbearable intestinal pain almost all the time, as well as several infections accompanied by fever and vomiting. Thank you
I am diagnosed Aplastic Anaemia in 2020. Did ATG. No response. Now due to fibrosis of liver I can't undergo BMT, ATG. I know I will die soon. But you nice people keep this planet healthy, loving and blissful ❤
Thank you for sharing this information. I just got diagnosed. I'm 64 years old and I have stage 4 lung cancer and ms. I hope 🙏🏼 I can beat this! This is my 5th time fighting cancer. I am trying to learn as much as I can to fight. I read that the bone marrow transplant could heal MDS and stop the progression of MS. Do you agree with these findings? Thank you for your time and services. ❤️🙏🏼✝️
Just now starting to learn more about my disease outcome is not good but gives me time to prepare for my lord and Savior thank you God for your mercy amen 😊
Please also check out the website, aamds.org, for much more information about MDS. The disease-specific pages begin here: www.aamds.org/mds and more webinars are ready for you here: www.aamds.org/education/patient-family-webinars (filter by disease type or keyword if you like.)
mi mama tiene esa enfermedad y empezo con lenalomida y tuvo reaccion alergica ahora esta tomando azacitidina tiene 85 años y le hacen transfuciones pero nonsube su hemoglobina es la tercera vez que le ponen espero que funcione tiene sindrome mieledisplasico areb 2
My dad has this cancer and we just found out. This is going to help me be a much better support system for him to understand and ask questions as I come with him for treatments. Thank you for this presentation
Hello! Yes, AAMDSIF sponsors patient-led support groups, available to anyone with a Zoom link. The June list will be posting later today, here: www.aamds.org/support/patient-family-support-groups
Buenas tardes soy de perú, mi hijo de 12 años tiene ese diagnostico, realmente aquí no hay mucha información sobre esa enfermedad en niños, actualmente el está en tratamiento con romiplostim ( sus plaquetas se mantienen en 100k , 105k con el medicamento ) y hierro (se mantiene en 11) a mi me gustaría obtener mayor información, le agradecería.
Hello. Here are some resources that may help your son and your family. -Global Pediatric MDS Imitative, www.pediatricmds.org/ -Contact Inga Hofmann via the groups Facebook page, facebook.com/GlobalPediatricMDSInitiative/ or email her at inga@pediatricmds.org. -There are some clinical trials at NIH that he may qualify to participate. Please email Jennifer Farren at NIH jennifer.farren@nih.gov. Hola. Aquí encontrará algunos recursos que pueden ayudar a su hijo y a su familia. -Imitativo global de MDS pediátrico, www.pediatricmds.org/ -Comuníquese con Inga Hofmann a través de la página de Facebook del grupo, facebook.com/GlobalPediatricMDSInitiative/ o envíele un correo electrónico a inga@pediatricmds.org. -Hay algunos ensayos clínicos en los NIH para los que puede calificar para participar. Envíe un correo electrónico a Jennifer Farren a NIH jennifer.farren@nih.gov.
Hola. Aquí encontrará algunos recursos que pueden ayudar a su hijo y a su familia. -Imitativo global de MDS pediátrico, www.pediatricmds.org/ -Comuníquese con Inga Hofmann a través de la página de Facebook del grupo, facebook.com/GlobalPediatricMDSInitiative/ o envíele un correo electrónico a inga@pediatricmds.org. -Hay algunos ensayos clínicos en los NIH para los que puede calificar para participar. Envíe un correo electrónico a Jennifer Farren a NIH jennifer.farren@nih.gov.
My husband (74) has recently been diagnosed with Severe Aplastic Anemia. He has been in the hospital for 5 weeks now and is starting a drug treatment of Promacta, Clyclosporine and ATG.
Gracias por la informacion me diagnosticaron mielodisplacia hace poco más de un año me tratan con eritropoyetina de 10mil /u y filgastrin. Saludos desde Argentina
Hello... Doctors Say my 8 yo son have obliterans bronchiolitis...they do CT and bronhoskophy...he have no any signs... No cough etc..he can run and play with other kids.. is there chance he dont have
Thank you for reaching out to us. Getting a correct diagnosis can be challenging and it is always a good idea to get a second opinion. Getting a second opinion will help you gather additional information about a diagnosis, confirm that the diagnosis is correct, and teach you more about treatment options. This will allow you to make informed decisions about your son's medical care.
We are sorry to hear about your daughter and we hope she will be feeling better soon. To find out more about these diseases, please visit aamds.org where you can find many types of information and resources for your daughter and your family.
Hello, we are sorry to hear about your brother and hope he will be feeling better soon. What type of help are you looking for? Where do you live? We may be able to direct you to resources by country. And please look at the website here for more information about aplastic anemia: www.aamds.org/aplastic-anemia or PNH: www.aamds.org/pnh. Also you may email us at help@aamds.org.
My daughter has it my son has passed and my other son has health issues. The town where we live had a mill that made telephone poles and the toxic water they had as infants. Can this cause aplastic anemia?
My daughter was admitted to the hospital because of her urine was black she w is yellow and her hemoglobin’s were 4.3 and with her diagnosis her California insurance changed and the only doctor in LosAngels don’t accept her insurance no longer. She has severe aplastic anemia. She also has a rare blood type. She is 35 7 children on experimental trials. Now her kidneys took a hit her liver and she is quickly dying now so this is a stretch for me to ask “ Is there any doctors that will accept her type insurance medi cal that is a specialist in aplastic anemia?
Please call our offices, Eastern time, at (800) 747-2820, option 2 or email help@aamds.org. We want to try to help but we need more information, thank you!
The empathy that is seen in these healthcare providers are remarkable, so glad they are part of the health care system here. Thank you for this very insightful discussion and sharing your experiences
After 10 months of Eltrombopag my family member’s PNH Clone went from 87% to 5%! But the clone is back up after stopping Eltrombopag. Where can we report this?
My husband was diagnosed with Multiple Myeloma on his 70th birthday last July. He got a stem cell transplant to give us more time. He's actually doing well. Numbers coming up nicely. This cancer has no cure but they are surely saving his life, and giving us more time. We've been married 45 years, I'm not ready! God bless you and all you help. We are seeing the top Oncologist in Dallas, giving us more time, spectacular. We are secluded for 90-100 days, making sure he doesn't catch any infection, so far so good!
Buenos días saludos desde cumaná estado Sucre Venezuela me diagnosticaron con esa enfermedad, tengo 14 años es desesperante pero gracias por todo la información es muy buena..
Hi, thanks for writing. You can use this page to search for specialists www.aamds.org/patients/find-a-specialist OR call our toll-free number (800) 747-2820 Option 2, OR email help@aamds.org. We will do our best to help you find the specialist you want.
Hello, My mother has been diagnosed with MDs/ MPN overlap syndrome. She was on Viadza for a year and half no longer working. Can she try anything else. Open to clinical trials.We are desparate. We live in canada.
In Canada, please contact Aplastic Anemia and MDS Association of Canada, aamac.ca/. There are 21 clinical trials recruiting patients in Canada, clinicaltrials.gov/search?locStr=Canada&country=Canada&cond=mds&aggFilters=status:rec. We hope this helps!
Thank you for asking the question. Adult children can be a match for their parents. If not a full match, they can be a half match. Here is a webinar to watch about haploidentical transplants for MDS, www.aamds.org/webinar/haploidentical-transplant-mds.
The reason I ask is I have been dealing with this myself for about 2 years. It is just now developing a bone blast and we are looking at possible chemo and stem cell treatment. I am almost 61 yrs old. My youngest daughter said she would donate if needed. My brother is almost 68 yrs old . My doctor did not really want to use him . This has been a ride up and down for 2 years. I have just now been told this was possible leukemia. Thank you for the video you posted it was very informative and helpful. , @@AAMDSIF
If you had an AML patient with mutations IDH2, SF3B1, ASXL1, NPM1 and a history of heart disease would you choose low intensity chemo with a menin inhibitor or high intensity chemo with a menin inhibitor?
Hello, Thank you for reaching out to us. AAMDSIF does not offer any financial assistance. You can reach out to Dr. Dharma Choudhary to see if he can help with medical guidance. Dr. Dharma Choudhary Mob : +91-9971003605 Email : dharmabmt@yahoo.co.in Address : BLK Super Speciality Hospital Pusa Road, New Delhi-110005 If you do not live in this region, please send an email to help@aamds.org for further information.
We are very sorry to hear this. Although we do not have a personal contact with the Philippine Society for Blood & Marrow Transplantation, here are the physicians who are members: psbmt.org/contactus.php One of these physicians may be able to assist you. Or contact the HSCT Program, St Luke’s Medical Center and National Kidney Transplant Institute, Quezon City, Philippines
My brother is diagnosed with PNH in India. The family is very much scared as he is just maried and have a small child. What should we do?? He is also not having any insurance coverage.
Thank you for reaching out to us. We are sorry to hear your brother is having medical concerns. AAMDSIF does not offer any financial assistance. You can reach out to Dr. Dharma Choudhary to see if he can help with medical guidance. Dr. Dharma Choudhary Mob : +91-9971003605 Email : dharmabmt@yahoo.co.in Address : BLK Super Speciality Hospital Pusa Road, New Delhi-110005 Wishing you and your family all the best.
