Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Moyamoya Disease

What is Moyamoya Disease?

Moyamoya Disease is a rare disorder caused by blocked arteries at the base of the brain in the the basal ganglia.

 

Moyamoya Disease is a rare disorder caused by blocked arteries at the base of the brain in the the basal ganglia.
Acknowledgement of Moyamoya Disease has not been added yet.
3.16http://www.orpha.net
Synonyms for Moyamoya Disease has not been added yet.
Cause of Moyamoya Disease has not been added yet.
There are a few symptoms affecting patients with Moyamoya Disease, including:
Name Description
Transient Ischemic Attacks (TIA) Transient Ischemic Attacks (TIA) are transient strokes that last only a few minutes and occur when the blood supply to part of the brain is briefly interrupted.
Cerebral Hemorrhage Cerebral hemorrhaging is bleeding inside the brain, between the brain and the membranes that cover the brain, between the skull and the covering of the brain, or bleeding between the layers of the brain's covering.
Diagnosis of Moyamoya Disease has not been added yet.
Diagnostic tests of Moyamoya Disease has not been added yet
Treatments of Moyamoya Disease has not been added yet.
If treated properly, the long-term outlook for patients with Moyamoya Disease is good.
Tips or Suggestions of Moyamoya Disease has not been added yet.
References of Moyamoya Disease has not been added yet.
Any recent posts? Created by PatriciaH
Last updated 23 May 2015, 09:57 AM

Posted by PatriciaH
23 May 2015, 09:57 AM

Thanks Claris, I am active in both Moyamoya.com and the Moyamoya Facebook site set up by Tara McInnes in the USA. No one my age. I live in Canada. I am hoping that if I use enough different forums, I might connect! ...although I note that this forum is not very active. Take care, Pat

Posted by cmondiaz
22 May 2015, 05:47 AM

Hi PatriciaH, I don't know of anyone but perhaps check out Moyamoya.com and see if you can reach out to any members there? Best wishes, Claris

Posted by PatriciaH
21 May 2015, 12:08 PM

Hello...any older adults with Moyamoya? I am 72 and recently diagnosed...would appreciate anyone older with MM.

anyone with this disease? Created by shar808
Last updated 25 Aug 2014, 09:46 PM

Posted by Kristi1
25 Aug 2014, 09:46 PM

I was my neurosurgeons first Moya Moya patient, if I had know that before surgery I would have went somewhere else. Was done 11-26-12 at St. Louis University Hospital. Second stroke in 6-2013 had second right sided surgery on 11-12-13 by Dr. Steinberg at Stanford, 6 month post testing showed I still have blood flowing to my brain, instead of pre-surgery neg. flow.

Posted by cmondiaz
28 Feb 2009, 04:24 AM

Hi there! There is a Moyamoya center at Stanford University that is headed by Dr. Steinberg who is the chief neurosurgeon and also does research on the disease. I have heard many good things about him. I myself had my surgeries performed in Berlin, Germany (I live in the U.K. now) and the Dr. there also researches the disease and has a lot of experience with Moyamoya patients.

Posted by tresa
14 Dec 2008, 12:44 AM

I live in Nashville Tenn. And recently went through both sugeries on both sides of the brain. There is a excellent Dr. @ Vanderbilt Medical Center who is well experienced in treating Moyamoya and his name is Dr. Robert Mericle..what a name huh? And he truly is a miracle. My first surgery was 15 1/2 long. I went straight to intensive care and came home 2 days later..My head wasn't even shaved only a partial cut that he needed to do for the surgery. 1st surgery was on 10/23/06..most recent 6/2/08. No major complications whatsoever. I would recommend this Dr. to anyone with MM.

You can do ANYTHING! Created by cmondiaz
Last updated 7 Mar 2011, 08:43 PM

Posted by cmondiaz
7 Mar 2011, 08:43 PM

Hello everyone! I just wanted to share that yesterday (March 11, 2011), I ran a Half Marathon in 2hours and 50minutes....I know, not exactly the best finishing time, but the point is, I did it and I finished running 13 miles! This means that guess what? I believe that you all can do ANYTHING you set your mind to. Be confident, be happy and be true to yourself and go for your dreams and goals!!!

Raise Funds for Moyamoya Research Created by cmondiaz
Last updated 9 Aug 2010, 01:18 PM

Posted by cmondiaz
9 Aug 2010, 01:18 PM

Hello Everyone! I am also a member of Moyamoya.com (you should sign up if you are not already) and the creator of the site has made an agreement with Dr. Steinberg of Stanford and Dr. Scott from Boston Hospital. A new Moyamoya.com Sponsor T-shirt is being sold on the website and 30% of the proceeds will be donated towards each of the hospitals (15% each) for Moyamoya research. Please send this out to as many people as you know to help raise money for this! I have already bought my shirt =) Have a great day everyone and I hope you are all doing well with managing your disease! http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=prodshow&ref=sponsort Sincerely, Claris M. Diaz

moyamoya Created by Eileen
Last updated 28 Feb 2009, 04:20 AM

Posted by cmondiaz
28 Feb 2009, 04:20 AM

Hi, I agree as well. I had my 1st surgery Oct. 0f 08 then the second, which was also MUCH MUCH harder Nov. of 08. I am also still recovery from the second surgery. And yes, I have been quite depressed since. I've been having a lot of ups and downs, days when I feel like I can get through it, and other days, when I just want to give up.

Posted by tresa
16 Dec 2008, 04:39 AM

Eileen, I myself had my second brain surgery in June 08, I also suffer from depression. I think some of it is normal. My Dr. has told me so. The body goes through so much. Do you also have seizures if I may ask? I hope you have or are starting to heal by now. I wish you all the best. My Dr. also says the second surgery is almost always harder than the first. I know it was for me. I was in the hospital for 2 days for the first and the surgery lasted for 15 1/2 hours. This last one I was in the hospital for a week, and I am still recovering 6 months later, slowely but surely. God Bless You.

Posted by Eileen
12 Dec 2008, 12:07 PM

i have had moyamoya since may 08 then i had brain surgery i've been always depressed is that normal?

Welcome to RareShare Created by biotechguy
Last updated 17 Dec 2008, 03:57 PM

Posted by biotechguy
17 Dec 2008, 03:57 PM

Hi Everyone, My name is David Isserman and I am one of the co-founders of RareShare. I just wanted to quickly welcome you all to the Site. If you ever have any questions about RareShare or suggestions on improving the Site, please feel free to contact me at david@rareshare.org. David

Community External News Link
Title Date Link
Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

<p>Hello. My name is Raymon...
I am the mother of a 14yr o...
I am a young 72 yr old Cana...
First ischemic stroke at ag...
My husband was diagnosed wi...
Mom to 3 wonderful children...
Diagnosed in 1996. Surgerie...
My oldest son was diagnosed...
I had moyamoya, because my ...
Recently diagnosed with Moy...
I have a child with Moyamoy...
I am the mother of a 7 year...
I am a mother of a child wi...
I just turned 24, 5 years a...
I am 37 yrs old and was dia...
Hi, I am the mother of Che...
My Name is Aisha. <p>&nbsp;...
I was diagnosed with Moya M...
Im the mother of a 8yr old ...
This is mom here, but my da...
well let see i'm see turn 3...
i was diganosed with moyamo...
I was first DX with Moyamoy...
I was diagnosed with moyamo...
I was diagnosed with Moyamo...
My daughter Kristy died las...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Any recent posts?

Created by PatriciaH | Last updated 23 May 2015, 09:57 AM

anyone with this disease?

Created by shar808 | Last updated 25 Aug 2014, 09:46 PM

You can do ANYTHING!

Created by cmondiaz | Last updated 7 Mar 2011, 08:43 PM

Raise Funds for Moyamoya Research

Created by cmondiaz | Last updated 9 Aug 2010, 01:18 PM

moyamoya

Created by Eileen | Last updated 28 Feb 2009, 04:20 AM

Welcome to RareShare

Created by biotechguy | Last updated 17 Dec 2008, 03:57 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.