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Wittycjt: Cindy in NJ, I see Dr Easaw, hematologist, in Lakewood, NJ. I am satisfied with her. She listens, is patient and compassionate. She is never hurried and I believe she truly listens, contemplates and then acts. I really think I'm fortunate.
Please list state first then their name it makes it easier to find someone in others locations. Thanks
Also if you have posted and have now changed your mind please remove, thank you
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I have two : Philadelphia, PA Dr. Adam Cuker, University of PA Div. of blood disorders and thrombosis center, no oncology treated here, very focused world class doc.
Los Angeles, CA Dr. Howard Liebman, University of So. California, again, thrombosis center, no oncology. Dr liebman has done more studies and has more letters and titles after his name than I could list here.
Penacook N.H. - i see a total of 15 specialists at certain times that all have their fields of expertise. some every month some every 3--6--9-yearly My PCP i talk to their office every 3 days OR twice a week with my PT/INR done and my hemo once a year and as needed for bridging protocol with my surgeries.
I see dr Donnelly! He diagnosed me after 13 years of being his patient with another rare blood disease Polycythemia Vera! Another thick blood disease! I'm a barrel of laughs!!! He DD's me after I lost my leg, but he's sorry! I'm satisfied cuz I'm feeling better now
I am in Southern California. Newly diagnosed. My Internal medicine doctor has me on Xarelto and a baby aspirin. Not much to monitor. I also see a vascular specialist for a chronic DVT.
Oops, you want names. I too have other compounding issues. MTHFR genetic mutations discovered by Dr. Evelyne Llorente in Fountain Valley, CA. My vascular specialist is Dr. Ehab Mady in Newport Beach, CA. My Internal Medicine Doctor is Jennifer Knox-Barleben in Newport Beach, CA. "It takes a village".
I'm in Atlanta, Georgia and to to Kaiser Hospital. My Hematologist is Dr. Shah. I get so information here than anywhere else. Thanks for all the support.
Texas, Galveston- Dr Ganti UTMB in Galveston,Texas? Found this posted on here this website.
New Jersey, New Brunswick-Also Rutgers University Hosp in New Brunswick, Nj supposedly has a dedicated "thrombotic issues" floor. Call the hospital for possible referral, found this in a post on here, I do not have personal experience with this
Out here in Colorado we APS patients are blessed to have the help of an outstanding young woman named Dr. Jill Schofield--she's a pioneer in APS, having studied with Dr. Hughes himself in the past, and subsequently specializing in APS and other rare autoimmune conditions in her own practice😍.
And beyond her incredible skill--which is astounding, as described above--she is also incredibly kind, accommodating, perseverant, and devoted to the well-being of her patients (which is just as important as talent, as many patients who are chronically ill with hard to treat/diagnose diseases learn through painful life experience😥).
She currently manages a heavy case load of APS and Dysautonomia patients in a group of allergy and immunology clinics out here in the Denver Metro area called ImmunoE (virtually singlehandedly), so her client list is long and her wait list even longer--but as one of the best in Colorado, the United States, and in the field as a whole, the wait is well worth it😍.
Best of luck to anyone searching for relief and assistance--whether you find it with Dr. Schofield or have to see another specialist in a different part of the country, I wish you speedy healing, and all the help, advice, and support you're looking for😋
Bluffton SC and I see Dr. Gary Thomas a hematologist within the St Joseph Candler Cancer Center. He is a specialist, so I feel very comfortable with him and his knowledge of ALS. Going to see him tomorrow as a matter of fact!
Oh wow, Dr. Kroop is awesome!! She was in Boston at Beth Israel and her husband took job at Vanderbilt in the 90's... I was a patient of hers and was so bummed when she left to go to Tennessee. I live in the Boston/Providence area and seem to have difficulty finding a good doctor who stays!! Right now I can't really recommend anyone so frustrating
Pennsylvania- from another member here with high praises: University of Pennsylvania for thrombosis disorders Dr Adam Cuker- Specialist in thrombotic disorders 215 615 -6555
Indiana, Valparaiso. Dr Tarek Braik- hematologist, board certified in Hematology, oncology, internal medicine. Another member is qiite pleased with him 219 476-7777.
Texas, Austin- hematologist: Dr Punit Chadha, 4101 James Casey St phone: 512 447-2202. Place name in search box here for more info🧐never mind, on further investigation another member found not to be so good, try at your own risk
Pennsylvania- I found the Rheumatologist who cared for me when in the hospital for APS/ stroke: I was in Jefferson University Hospital, Philadelphia, Pennsylvania. Her name is Dr Kiriakidou, the phone I have is 215 955-8430. Good luck!
Cannot say I recommend- be very cautious. He absolutely does not believe in fluctuating antibody titers. ( he advised pulling me off all anticoagulation and taking away my diagnosis.)
To his credit I saw him very early - when I was first diagnosed. My antibodies were in a sero negative phase. I plan to reach out to him with a letter letting with scans of 8 more DVT’s , and positive antibodies. I wonder if he could possibly see things differently now? I wonder if he could have an interest in finding out what ,” sub set” of APS behaves like this? If there are a lot of cases like this, could it spur a research project? He is after all, first and foremost a researcher. ( As it turns out I have a very aggressive case! 8 DVT’s in 22 months is really a problem.)
Perhaps I’m not giving him enough credit. I won’t know unless I try- I’ll write a post at a later date.
There are non that I have found in california or southern Utah. My last 2 GP drs have no clue. Neither did hematology. Buuuut, I do have a pain dr who is supportive and knows how painful my issues are. I have been a toy for 8 years in pain management
Arizona, Glendale, Phoenix, poss Sun City- Dr Elisa Bomgaars, hematologist 480 582-0735. She has a website. She specializes in some autoimmune diseases. * Sjogren’s jcgc
*Very knowledgeable with APS and very balanced in his approach. Has experience with severe cases of aps and is familiar with cautiously running the INR at 4 or higher when needed. He lets the patients body ( clotting history and how the patients feels/ symptoms) dictate the need for INR.
Well, in light of Dr Hughes- Nov 2018 blog letter- Dr Erkan would be remiss in taking such a follow up letter lightly. A response to such a letter would be at the very least gentlemanly.
I have been seeing Dr Stanek at Banner MD Anderson but am attempting to switch to a hematologist at Ironwood Cancer Centers as I’m concerned about my quality of care and want a second opinion. This doc says he’s “very familiar” with APS and that it’s often misdiagnosed . I’m a well educated patient, so I’m taking all my past lab paperwork in and plan to ask a LOT of questions to gauge his actual experience and trustworthiness.
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so frustrating
Twitter Fame! Celebrity support at last :)
Peoples experiences of self-testing needed for the AntiCoagulation Self-Monitoring Campaign (ACSMA)
