I have Good News & Bad News...(Long)
I was recently diagnosed after 12 years with Chiari Malformation 1, Connective Tissue Disease, and Occult Tethered Cord Syndrome. Chiari Malformation is a congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, protrude through the opening at the base of the skull. It crowds the skull and spinal cord, putting pressure on both the brain and spine. This affects 1 in 1,000 people. Every day was constant headaches, tingling in my feet and arms, dizziness, trouble swallowing, extreme pain in the neck and shoulders, balance problems and the list goes on...
The reason why I am telling you guys this is because you all gave me so much support for my wedding. You helped me out in so many ways. (I still haven't done my review yet..sorry..I will do it soon..promise) These conditions affect people of all races and ages. People have been misdiagnosed for years before they really find out what's going on. (in my case 12, they even told me to go to the psychiartrist cause they thought it was all in my head..) Many Physicians are not familiar with the latest findings, so treatment plans may be based on old inaccurate data. There is a lack of awareness and it creates an additional burden for patients as they try to explain to family members, friends, etc..what they are going through.
There also is a lack of research dollars from the us govt. I feel like it is time that I raise my voice and make people aware.
I am scheduled for surgery after the new year at North Shore LIJ. Since Medical Insurance does not cover anything what so ever I want to start a fundraiser of some sort to provide financial help for those who are not able to pay for any part of the exam, surgery or testing. I also want to raise money for research. Someone with Chiari may not be able to Bend over, lift heavy objects, sit or stand for long periods of time, work on a computer with out pain, be in a noisy environment, etc..Any advice or people who have done fundraising before please contact me and give me some pointers.
Some more info:
conquerchiari.org
and
www.asap.org
or
(the doctors who are doing my surgery)
http://www.northshorelij.com/body.cfm?ID=6407
Thanks so much guys for the support and reading my long long letter..any advice would be greatly appreciated...
Stephanie![]()
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The reason why I am telling you guys this is because you all gave me so much support for my wedding. You helped me out in so many ways. (I still haven't done my review yet..sorry..I will do it soon..promise) These conditions affect people of all races and ages. People have been misdiagnosed for years before they really find out what's going on. (in my case 12, they even told me to go to the psychiartrist cause they thought it was all in my head..) Many Physicians are not familiar with the latest findings, so treatment plans may be based on old inaccurate data. There is a lack of awareness and it creates an additional burden for patients as they try to explain to family members, friends, etc..what they are going through.
There also is a lack of research dollars from the us govt. I feel like it is time that I raise my voice and make people aware.
I am scheduled for surgery after the new year at North Shore LIJ. Since Medical Insurance does not cover anything what so ever I want to start a fundraiser of some sort to provide financial help for those who are not able to pay for any part of the exam, surgery or testing. I also want to raise money for research. Someone with Chiari may not be able to Bend over, lift heavy objects, sit or stand for long periods of time, work on a computer with out pain, be in a noisy environment, etc..Any advice or people who have done fundraising before please contact me and give me some pointers.
Some more info:
conquerchiari.org
and
www.asap.org
or
(the doctors who are doing my surgery)
http://www.northshorelij.com/body.cfm?ID=6407
Thanks so much guys for the support and reading my long long letter..any advice would be greatly appreciated...
Stephanie
