Aidpage

A rare and sudden brain disease has caused me to go in great debt with medical bills.  I am only 29 and in good health otherwise, but one day last summer I began to get terrible headaches.  After a few month of intense (and expensive) neurological tests they diagnosed me with a rare Neuro-Vascular disease call MoyaMoya Disease.  It basicall causes blood vessels in your brain to narrow so much that your brain doesn't get enough blood flow which will call strokes.  The only way to treat this is by surgery.  When I went in to speak with a surgeon about my surgical options he told me I needed to be checked in the hospital that night.  I was in surgery by 8 am the next morning to operate on the left side of my brain.  Three weeks later they had to operate on the right side of my brain.  I spent a total of 17 days in the hospital.  I have had, and will need to continue to have, several MRI's and Angiograms-- all of which (even with insurance) are very costly.  My family and friends have helped as much as they can, but everyone is in hard times these days.  I'm now hoping to find kindness in stranger to help with my ever-growing medical bills, and so I can continue to afford the care I will need.  Thank you, Jennifer

If you have a rare disease it can be difficult enough, but trying to find the answers you need can be next to impossible! I have found a site that not only indexes rare diseases and disorders in alphabetical order, but they also link you to more information, resources, support,  and health care assistance (if available) 

 NORD - Rare disease database

NORD also administers Early Access Programs for investigational new drugs (INDs) under the Food and Drug Administration’s approved “Treatment-IND” programs that allow for a limited number of individuals to receive certain investigational drugs prior to FDA marketing approval, as well as a Travel Assistance Program that provides travel and lodging assistance for patients participating in clinical and research studies.

I am a single mother raising two teenagers.  Im not on aidpage for no one particular reason, there are many.  Most of us on here are going and/or have gone through some hard times.  I am in hope of meeting new friends and lending a shoulder if someone should need some emotional support.  In return you may find that I am in need of your shoulder as well.

I am trying to live with the fact that my 17 year old son has a rare disease known as Wegeners Granulomatosis and there is no cure.  This disease was caught in some of the last stages, therefore he is catagorized as terminal.. So, I can feel everyones pain who is having a trying time as well..  Maybe this site will help keep our minds off of things for a bit, thats what I am hoping for..  If there is anything I could do for anyone I would, I can offer you a friend or just someone to talk to..

If there are any doctors or medical proffesionals on the site, I would be so grateful if you could tell me more about this disease.. Thanks

I was recently diagnosed with a rare autoimmune disease termed Dermatomyositis.  This disease eats away skin and muscle, much like osteoporosis eats holes in bone.  This is a very bad disease, causing severe pain and muscle weakness.  I have been unable to work since August 2006.  I have spent 6 wks in the hospital, on and off, since then.  I went from being a hard-working nurse, spending time with my family, such as camping, four-wheeler riding, etc, to  being unable to walk very far without assistance, difficulty swallowing, breathing and many other problems.  My husband of 14 years, works but does not make enough to pay all the bills when we've been budgeted for two incomes. We have two beautiful daughters and are just good people going through a really bad time.  All of the savings is gone now, we've sold all that we can and we have no idea how to make it.  If there is anyone out there that can help us, please do so ..... my e-mail address is darianep@yahoo.com