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A close friend’s son 34y.o is in the process of dealing with a new to him blood disorder - a rare - 2 in a million disease.
Scary and confusing time, he is getting worse.
Could anyone recommend the best of the hematology centers in the country? Or an individual experienced doctors?
Where should he go for the highest level of expertise?
USA?
Or even abroad?
Sorry you have to experience this under dire circumstances. There really isn't any monolithic single institution that would handle all such cases.
It depends on what country you live in and how developed their institutions are. It also depends on each individual center and the research team associated with that institution as to personal interest of the staff there.
Hematology has many branches and obviously the more common conditions and traits most hematologist would be well versed in. As one gets more rare then the experts become less and less.
My own personal bias is with the Mayo Clinic as I attended a week long seminar given by hematopathologist and clinical hematologist. They are research publishing oriented which means they go into the newer uncharted waters of hematology.
One thing you can do is google the name of the condition and recent research done on the condition and then look at the people who did the published paper and see what institution they are located at.
Obviously during an emergency one needs to take care of that first and then when stable one can seek out and go to such locations. Since they were diagnosed by a hematologist, the hematologist might be able to look into that and give you some recommendations.
Past hematology supervisor now retired.
Last edited by Medical Lab Guy; 10-23-2023 at 01:51 PM..
Cleveland Clinic Main Campus, Cleveland, OH (Cleveland or Florida (Ft Lauderdale I think)
Fred Hutchinson Cancer Center in Seattle
M.D. Anderson in Texas
Memorial Slone Kettering in NYC
Dana Farber in Boston
My first stop would be Cleveland Clinic. They picked up an incredibly rare blood cancer (Multiple Myaloma) in a good friend after he went almost everywhere else with no help
If you don’t mind I write to you privately? - as I am not authorized by the family to disclose it on public forums.
Someone may recognize the information due to identifiable detailed information - I don’t want to add to their distress
I am just helping with the research to pass it on to the family.
If you don’t mind I write to you privately? - as I am not authorized by the family to disclose it on public forums.
Someone may recognize the information due to identifiable detailed information - I don’t want to add to their distress
I am just helping with the research to pass it on to the family.
I am not exactly sure your expectations are well placed. There appears to be some sort of disagreement or discord over his treatment and or diagnosis.
I can't offer a second opinion. Speaking for myself I don't intervene or substitute my opinion over a treating doctor. I explain to people the process and what the doctor is doing and path they are taking. Most of the time doctors don't have the time to explain everything.
My first stop would be Cleveland Clinic. They picked up an incredibly rare blood cancer (Multiple Myaloma) in a good friend after he went almost everywhere else with no help
I made a mistake in my post.
Our friend was diagnosed at the Mayo Clinic in Jacksonville, FL. They picked up what every other (OF THE BEST) clinics missed.
Our friend was diagnosed at the Mayo Clinic in Jacksonville, FL. They picked up what every other (OF THE BEST) clinics missed.
It might have been a rare form of MM or very early. Normally it is detected with a very high protein level in the blood if not overt symptoms of lytic bone lesions. Sometimes the protein spike can hide among the other proteins.
I remember one case of a coworker asking me to review a blood smear of a patient she was having trouble with. When she was handing me the slide I could see the classic tinting of the slide was abnormal and typical of MM. As told her it looked like MM and she asked how did I know. It was poorly stained also typical for MM as the high protein interfere with staining. I told her to remove the plasma and resuspend in saline to get rid of the interference and the morphology under the microscope was clear with plasmacytic lymphocytes consistent with the leukemic phase of MM. That was a known well established case. Early cases where the protein might not be so elevated might be missed.
In another case the same thing happened with a different patient and this time no history nor labs that I could check the total protein with so I did the total protein test on my own and it turned out to be high thus accounting for the interference seen. I called the doctor on the ward and told them that they had a patient with difficulties on the blood smear demonstrating a very high total protein and asked if they had a history of MM. They didn't and that's all I could do on my part is ask and the rest is up to the doctor.
The Bence-Jones protein that is seen in the urine isn't picked up easily with testing that is meant more for albumin. Back in the day all positive urine protein samples were tested with trichloroacetic acid (TCA). A weak protein with the dipstick and a stronger reaction with TCA is indicative of Bence-Jones protein. They got rid of that and so some of those cases can be missed.
The institution where I worked is affiliated with Anderson.
A close friend’s son 34y.o is in the process of dealing with a new to him blood disorder - a rare - 2 in a million disease.
Scary and confusing time, he is getting worse.
Could anyone recommend the best of the hematology centers in the country? Or an individual experienced doctors?
Where should he go for the highest level of expertise?
USA?
Or even abroad?
Thank you in advance
I just found out about a rare blood disease that I have. I first went to the local hematologist after being referred by my physician. No "big center" is going to take a walk-in patient, I learned.
Last edited by clevergirl67; 10-24-2023 at 10:42 AM..
2 in a million is rare alright. Another vote here for Mayo clinic. There is a Mayo clinic in Arizona as well as Minnesota. Also, there's a big hematology center in Boston if you're on the east coast.
Also be aware that pathology slides might be sent to other institutions for second opinions. I have sent my slides to Johns Hopkins for second opinions since I have a rare disease.
Last edited by Maddie104; 10-29-2023 at 09:06 AM..
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