HI

My niece (who is 18 years old) has suffered all her life with Sickle Cell, she has the worst form of this disease, which means she has to have a blood transfusion each month to stop her having another stroke.  These have to stop soon as they have damaged her liver with extremely high iron levels.  So although things aren't going well at all with her sickle - she has now been diagnosed with MoyaMoya.  The information on this in England is very poor and so have begun to trawl the internet to find any info i can for her and her mom.  Can anyone advise me or direct me to the best sites for clear information

Many thanks in advance

Welcome to this wonderful site.  I came upon this site while trying to find out more about MM when I was first diagnosed as well.  As you scroll through previous topics, you can find out how others have dealt and are currenlty dealing with their MM diagnosis and treatment.  You will quickly learn that we are all different in own ways.  To me, the most important factor, is that your niece is being treated by a MM specialist.  They seem to be hard to come by; although, there is a list of surgeons available to you to browse through on this site.  I'm not too sure about who is available in England, but if your niece is able to travel, I say it is well worth the travel to be seen by a specialist. 

Another recent MM.com family member who lives in Germany sent her films to a MM specialist in California was able to be properly diagnosed and treated (surgery) by a MM specialist there.  I too traveled across the U.S. to seek treatment from a MM specialist since none (known to me at least) was available to me in my home state.  ;  I would suggest having your niece's films sent to MM specialists for their review/opinions. 

Please remember that MM is a progressive disease, so it is important that your niece seek medical advice from a MM specialist as soon as she is able.  I don't mean to alarm you..I just want her to be able to receive the best care possible in a timely manner. (My surgery was an "emergency" surgey since I was not diagnosed w/MM until my THIRD opinion).  As with anything else, the longer you wait, the more risks involved...more occulsion is a possibility, etc. 

Well, you've come to the right place.  You may also click on "Links" above which will take you to other helpful sites.

Please continue to ask any questions you may have.  We're here for you!  Again, welcome to the family! 

Take care,
Shan

Hi Serendipity

Welcome aboard!

I was searching through google and found this on SCD and Moya moya Disease.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hope it helps
Kevin