Thank you for sharing your story, Katherine. Please feel free to reach out to us at help@aamds.org if you'd like more individualized information. There is more PNH information here www.aamds.org/diseases/pnh as well as links to downloadable guides here: www.aamds.org/education/patient-guides-and-fact-sheets. We hope your daughter will feel better soon.

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We hope you are doing well!

Please feel free to reach out to our patient educator at help@aamds.org. Don't forget we have webinars and support groups focused on PNH and aplastic anemia at aamds.org.

Oh thank you so much I have been feeling lost, because I didn't know anyone who has Aplastic Anemia with PNH

@@freedomforgiveness6041 You are not alone! We would be happy to connect you with other patients just like you. Give us a call or send an email to help@aamds.org.

Hi Tenya, Thank you for reaching out and we are glad to hear Brandi's story has given you hope. The physician she is referring to is Dr. David Araten at NYU who treats adult patients with PNH. Would you be interested in talking with a pediatric physician in NY? Also, you can connect with other pedicatric parents on two facebook support groups- Band of Mothers, facebook.com/BandOfMothersInTheFightAgainstAplasticAnemia/ and Global MDS Pediatric Group, facebook.com/GlobalPediatrcMDSInitiative/. We look forward to hearing from you soon.

@@AAMDSIF yes. Thank you so much for your response. I'd LOVE for you to point me in the direction of pediatric MDS and BMT specialists in NY. Really in need of some 2nd and 3rd opinions about some current things live GVHD and possible drug induced liver injury (DILI) 💜🙏🏾

@@TenYah144 Hi Tenya - Contact Dr. Jeffrey Lipton at the Steven & Alexandra Cohen Children's Medical Center Of New York . Phone: (516) 876-6000 or 718-470-3470. If you would be able to go outside of NY, contact Dr. Akiko Shimamura at Boston Children's Hospital. Phone 617-919- 617-919-6109 or 617-730-0934

@@AAMDSIF that's where my daughter is currently receiving care. At Cohen's lol. I think I know Dr.Lipton although another specialist is her doctor. Thanks for the info

Hello, Chase, thanks for reaching out. We have several ways to provide you with more information. The website is www.aamds.org, and you can find out about both diseases there. Also, we have a patient educator who can help. help@aamds.org is the email, and the toll-free phone line is (800) 747-2820 x 2. You are not alone, so please do reach out to our patient educator soon. Take care!

Hello I have medicine for these contact me urgently my contact number is mine DP pic call me in watsup

He is only 12 yrs old and he was diagnosed last September of 2023 hes too young and we dont know sometimes what to do if his sickness attacked him i felt so pity for him i love my son so much

Hello, here is more information about aplastic anemia: www.aamds.org/diseases/aplastic-anemia.

⁠I am so sorry about your son. A friends 5 year old has also just been diagnosed (Nov 2023) and will be having a bone marrow transplant in January. I pray for both to return to good health❤️❤️❤️

Brandi is doing well and accomplishing her dreams!

Thank you for reaching out to us. We are sorry to hear that you are 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 all the best.

We are sorry to hear your brother has not yet had a response to ATG. Some patients do need a second round of ATG for the treatment to work. There is treatment for PNH. Your brother's physician can request access to PNH treatments through Alexion Pharmaceuticals here: alexion.com/our-commitment/global-access-to-medicines-program . Please provide this link to your physician. We hope your brother is feeling better soon.

Hello I have medicine for these contact me urgently my contact number is mine DP pic call me in watsup

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.

If you could please tell us which country is where you live?

Of course, we'd be happy to help with information! You can find PNH information here: www.aamds.org/diseases/pnh and you can email help@aamds.org at any time. We hope your friend will be feeling better soon.

Is there a deficiency in vitamin d?

Hello! You can find out more about aplastic anemia on the AAMDSIF website. aamds.org, and here is the first aplastic anemia web page to visit: www.aamds.org/diseases/aplastic-anemia

@@AAMDSIF thankyou.

Can you please tell what are the treatments for non severe aplastic anemia?

Thank you for reaching out to AAMDSIF. There are many factors that go into determining the prognosis of a course of treatment that need to be considered. This question is best addressed to a qualified hematologist/oncologist who has reviewed the patient's medical records. Transplants are complicated by many factors including (but not limited to) comorbid conditions such as diabetes, hypertension, previous cancer treatments. This is not something that you can get an answer to online. If you'd like to discuss this further or get a referral to a healthcare provider, please send an email to help@aamds.org. Julie P

Hello I have medicine for these contact me urgently my contact number is mine DP pic call me in watsup

Brandi is doing great! She is reaching many of her personal goals. Thanks for asking, and please let us know what we may do for you - email help@aamds.org or call (800) 747-2820, option 2.

@@AAMDSIF that’s great I would like to talk to her are email her about something my daughter goin through asplastic anemia and pnh

Please send an email to help@aamds.org. We'll take it from there!