Mast Cell Disorders Forum - Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston

Riverwn

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Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
12/31/10 at 04:51:10

(Archived from deborahw - original forum)
deborahw
I am starting a post on the most renowned mast cell researchers/specialists. Dr. Cem Akin is one of the worldwide leading researchers. He is located at Brigham & Young in Boston (with Dr. Castells) and is known for his compassion and willingness to help patients around the world, even with advice via email if possible.

He happens to be my doctor and I can only say the best things about him. I would highly recommend him to anyone needing mast cell help. It is well worth the travel to get the right help that could change your life for the better.

Dr. Akin has always been relatively easy to get a quick appointment with, so that is a great plus.

Here is his contact info:

Brigham & Young University Hospital
617-732-9850
850 Boylston Street Suite 540
Chestnut Hill, Mass 02467
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Deborah
19 March 2009 07:21 AM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #1 - 12/31/10 at 04:52:38 (Archived from thefoxx - original forum) thefoxx The rumors are true - he is going to Boston in July per Dr. Castells. 02 June 2009 08:25 AM
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Riverwn

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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #2 - 12/31/10 at 04:54:20

(Archived from deborahw - original forum)
deborahw

Yes. Dr. Akin told me that he was moving there with the hopes that it
will allow him to work in an environment that can create more opportunities to collaborate (as I am guessing there aren't a lot of masto specialists in the country and thus it must be hard if you are the only one in your area). I imagine that this means more opportunity for him and Dr. Castells to work together and push forward more quickly research on our disease. YAY!

I am sad that he is moving further away from me, but it is no big deal, as he helps his patients via email. If I really developed a new problem that I felt I needed to see him for, then I would just fly to Boston.
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Deborah
02 June 2009 08:55 AM

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Riverwn

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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #3 - 12/31/10 at 04:55:35

(Archived from riciag - original forum)
riciag
Deborah, i'm so sorry dr. akin is moving away from you, but that's so cool he's taking a bigger step helping us. Hopefully your disease will behave so you wont have to bother making plans to fly out to boston.
02 June 2009 10:45 AM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #4 - 12/31/10 at 04:56:51 (Archived from annfairfax - original forum) annfairfax Hi, I'm sorry too that Dr. Akin is moving away from us (I'm in Michigan)...but hopefully he will advance the knowledge of others about this disease. 26 June 2009 09:38 AM
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #5 - 12/31/10 at 04:58:08 (Archived from sunny44 - original forum) sunny44 I am one of Dr. Akin's patients and have scheduled an appt before he leaves hoping that he can provide a referral to another doctor in the area. r03 July 2009 01:32 PM
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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #6 - 12/31/10 at 04:59:30

(Archived from lindasimmons- original forum)
lindasimmons

we are new and have a appt with akin in boston on sept 23rd, it will take us 4 days to drive there with a very sick kid, i hope he is up for the challenge.
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Linda in Florida mom for lisa with ehlers-danlos,chiari,POTS I will not give up
03 September 2009 08:44 AM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #7 - 12/31/10 at 05:00:54 (Archived from deborahw - original forum) deborahw Any option of flying? Will it take 4 days because you are only driving a few hours each day? I know that everyone has different travelling limitations.... __________________ Feel well! Deborah 03 September 2009 08:47 AM
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #8 - 12/31/10 at 05:02:15 (Archived from thefoxx - original forum) thefoxx If flying is an option - check out spirit airlines - their rates are insanely cheap and you can sign up for their $19 club. Julie 03 September 2009 03:56 PM
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Riverwn

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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #9 - 12/31/10 at 05:03:49

(Archived from lindasimmons - original forum)
lindasimmons

Sadly the last time Lisa flew which was over a year ago she went limp before boarding the flight and had to be carried to her seat.She has severe POTS the hyperaderengic type that causes her to have syncopal convulsions, than go limp. Now with the corn issues and not tolerating smells it is all I can do to drive 10 miles to the lab, and the tech comes out to the car.She had problems with gas fumes from another car. She has gone from no allergies/triggers to all this in 4 months.We drive 8-10 hours a day and than let her rest as we sedate her durning travel so she doesnt react to car horns and poice sirens, she is tough.If I wasnt a RN, I wouldnt believe a person could have this many issues.
I'm hoping Dr Akin can get the corn trigger decreased enough for her tolerate life in a semi-normal way.She also has severe ehlers-danlos hypermobile so she has been in a wheelchair since 2006, so I lift and carry her thru the RV to get to the toliet. Linda in Fla
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Linda in Florida mom for lisa with ehlers-danlos,chiari,POTS I will not give up
03 September 2009 05:20 PM

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Riverwn

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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #10 - 12/31/10 at 05:05:03

(Archived from deborahw - original forum)
deborahw

Wow, I am sorry to hear that travel is so difficult. I know that when I travel, I have to practically stop eating and try to stay as relaxed as possible because in the back of my mind I know that I will downward spiral if I let my nerves get the better of me. Most of the time it works. I am really glad that you got Dr. Akin's appointment and he is so compassionate and nice that you will immediately feel a sense of relief!
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Deborah
03 September 2009 08:47 PM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #11 - 12/31/10 at 05:06:28 (Archived from illg - original forum) illg Hi Linda, My thoughts and prayers are with you. I was one of Dr. Akin's patients also. He is very nice. Just be honest with him and tell him your concerns. Hang in there! 03 September 2009 09:01 PM
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Riverwn

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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #12 - 12/31/10 at 05:07:58

(Archived from lindasimmons - original forum)
lindasimmons

Thanks, we always try to give a complete history and as much info as they request.
Linda in Fla
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Linda in Florida mom for lisa with ehlers-danlos,chiari,POTS I will not give up
04 September 2009 07:15 AM

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Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston
Reply #13 - 12/31/10 at 05:09:31

(Archived from benelux - original forum)
benelux

Hello,
I'm new and in a unique situation here...I'm the mother of a 20 year old son (the patient). I am living in England and he is attending university in Scotland.
Just over a year ago we went through a wild episode of getting a diagnosis, and treatment for, cholinergic urticaria. In this process, we ended up going to a hospital in Germany (UK medicine is very difficult to negotiate). At this time, my son was found to have elevated mast cell tryptase numbers (16.7 ug/l). We were told that this was just a strong marker for allergic reactions.
In the last year, we have had this test run two more times (to monitor, as recommended by an allergist). In October 2008 he tested at 15.0, and now today the local allergist called and said his numbers are now 15.7, and we should consider getting a bone marrow test done.
I am really lost with this stuff. His urticaria is under control with no meds (just exercise seems to control it). He's otherwise healthy, except daily mid day fatigue - which I'm not sure if that's his normal biorhythm or something else).
Can you please send me the e-mail address for Dr. Akin at Brigham Young? I really need some guidance from the ground up if this is something I need to act quickly with, or if the local allergist is over reacting.
Many thanks.
05 October 2009 08:09 AM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Dr. Cem Akin at Brigham Young Women's Hospital (Brigham and Women's) in Boston Reply #14 - 12/31/10 at 05:11:10 (Archived from thefoxx - original forum) thefoxx I know that Dr. Castells' email is mcastells@partners.org so I would assume Dr. Akin's would be cakin@partners.org. 06 October 2009 08:02 AM
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