How to find Experienced AA Hemotologist??

[prayingrbc]

I am looking for a way to locate hemotologists that specialize in Aplastic Anemia. Being such a rare disease I am looking for a well versed Aplastic Anemia doctor. Can anyone suggest how to go about this? I have looked on AAMDS.org and done google searches but can't seem to identify a well versed AA Doctor.

Thanks

[triumphe64]

Call Leigh Clark at AAMDS.

Dr. Maciejewski at Cleveland Clinic is world class. It depends where you are in Michigan.

Check with teaching hospitals close to you.

[Susan]

I second Dr Maciejewski. Well worth the travel to confirm a dx, to check in if disease/symptoms change, and for 2nd opinion. For a local AA specialist try hematology.org Find a Hematologist. Then you'll need to check if AA is listed as a specialty and do own comparisons -is hem at a major teaching hospital and up on current research? Have they published AA research and with any noted experts? Word of mouth is helpful depending on the source.

Post your question in Geographic thread too.
Good Luck!

[Susan]

Praying, if you are new to AA it's extremely beneficial to learn as much as you can about the disease. Use the aamds.org Online Learning educational webinars. Eventually you'll be able to get an idea yourself as to how much your local treating hem knows and how up to date he/she is.

I had a very kind and supportive local AA specialist in the past. But he was older and advised prednisone and didn't suggest ATG which I now which I had done way back. The prednisone ruined my bones. Whether it helped or was a coincidence, my platelets did go up from 24K to 151K.

I'm not new to AA but am also looking for a new experienced local hem who's very good at both AA and MDS since my disease has changed and the dx may have too.

[Chandra4intx]

I am not sure of your current situation and exactly what you need, but here is some info that may help. Dr. Neil Young at National Institutes of Health in Bethesda, Maryland is the leading research doctor for Aplastic Anemia. If you contact them they will pay for all of your testing and give you a definitive diagnosis. You have to pay for your trip there and accommodations but I felt this was well worth the peace of mind that I had the correct diagnosis. (We weren't sure if it was MDS or SAA due to some possible genetic markers) You may also qualify for treatment there which they pay for, although it would be in a clinical trial. I qualified last December but ended up staying close to home since I had a great doctor/hospital here in Texas, for my ATG and then subsequent bone marrow transplant in April. Hope this helps in some way...

[Susan]

I had a "complicated case" and finally received my correct diagnosis at the NIH. What a fantastic team. I had had 2 wrong dxs and advise to get a (unnecessary) transplant until I went to the NIH.

I'm going to doctor Mac at Cleveland Clinic because I don't want to travel that far this time since my ANC is low. Dr Maciewjewski trained at the NIH with Dr Neal Young and has done several research studies with him along with publications. Dr Mac has an excellent team as well. I'll ask him to have Dr Sekeres the leukemia expert, also at CC to take a look at my blasts and case.

Dr Mac can also work with my local team if needed. From what I've heard from many who go to the NIH more regularly, my impression is other than a few fairly local exceptions, the NIH doesn't get involved in consults with local treating hems. Still, NIH is the #1 place to go for an accurate dx and sometimes to get treatment option advise.

[amyangel]

Dr. Hari in Wisconsin !! We love him