Free Web Hosting Provider - Web Hosting - E-commerce - High Speed Internet - Free Web Page
Search the Web

Ehler-Danlos

Syndrome

Hopes


 

    To whom it may concern:

    I am sending this messages to all physicians and researchers in the medicine world, where there is still a lot diseases with no medicine..

    I send this message to every human all over the world, I donít care about place, all what I care about is reading somebody who can help me and give me some hope. I didnít find in my country any treatment, even any concern, because my disease is rare. As Iíve been told by some doctors, I am the only with this disease in Syria. I tried some contacts in the U.S. and France but with no result.

Let me introduce my self :
    My name is Rawaa Tawileh (a Girl) born in Damascus, Syria in 20/5/1976, I have a disease named (Ehlar-Danlos).

The disease was discovered when I was 14 months old, the of this disease are:
    - Fragile tissues, which are not able to get any beat because it will be damaged directly resulting in a wound of 1-3 cm according to the beat and the way the people surrounding deal with it. The wound is like the fish mouth, and it get bigger and bigger with time , and results a very ugly scar.

    - My joints are too elastic, so I can do any strange moves (for Example, its possible to my tong to reach my nose).

I was born in the last days of my 8th month. When my mother was pregnant by me she took a lot of drugs, Iíve been told that my disease is hereditary, but T searched a lot and didnít find any of my grand parents holding this disease.

    My family had many hereditary diseases, but it hadnít occur for me, any way: I searched a lot about the reasons for this disease with no results, Iíve even read the medicine books from the facultiesÖ.What I found useful in Syria is what Dr. Salwa Al-Sheikh wrote, and it was a tiny information

    Days after days, I was looking everywhere, and I visited 13 physicians in one year, and more was able to give me any hope but I think I was benefiting them from all what I know through my readings and research. Even those which I corresponded were not able to help me.

Something eye catching is that this disease is occurring for women over 40.

    The primary question in my mind is: is it possible that this disease born with me from my firs days? Or itís a result for the circumstances surrounding my born like having no good physicians, no good treatment?

    I think itís the second one , and I think itís the gibson which worked on weakening the tissues be because itís wasnít well treated .

    Lately, I know that the unavailability at the  (collagen) is behind my disease, and vitamin C will strengthen it??
Frankly speaking, I am tired four physicians in Syria, so I am Sending this message to everybody around the globe.

    From my readings, there was something saying that who holds this disease will have a brain or stomach problems, but I donít have any, and I think that not all the disease kinds are similar and I think that my case is the best.

    I think all the research about my disease done on physiologically bad patients, which is a very important factor for the treatment not to succeed, I discovered that from my own research, so please consider my thoughts.

    In 1989 I suggested on a doctor a surgery where we can transfer some tissues from one of my brother to my body and treating it with some special drugs to strengthen it and strengthen all the tissues in my body. The doctor said to me itís a good idea, and-as he told me Ė he discussed it in a medical conference in France but he said finally that there is some reason so he canít go ahead with it.


    I want to know about anybody holding disease, and Iíll be more than happy to discuss with him many things about our (strange) life. I should mention here the name of a herbal specialist (Essam Boukhari),Whom benefited me too much, he treated my muscles and me skin have got a little bit better, he was dealing with my situation too smartly, but the treatment lasted 3years and this is the Fourth one. Some thing I mentioned that in the herbal medicine Iíve got better a bit, so why there isnít any medicine which has been researched and tested by specialists and physicians?? This is my hope and I hope to find help and support.

    This disease banned many at natural living activities and joys, starting from studying in my home and earned certifications, and playedÖ
I will never give up, and I will continue to search for the (hidden facts).

    My last call for you is to care about my problem, because whom will live with such a disease will know whatís the exact meaning of hells and he will be enforced to give up and will not even try to light it.

    May be youíll ask how can I could face this disease, my answer is the faith in god and density first, and second: never give up. I am totally ready for tests and experiments by specialized physicians, but please without much side effects, I donít want to loose my like.

    I am looking for a drug everybody coming to these world with this disease, the medical researches proved itself in finding drugs for deadly diseasesÖ and I hope that the year 2000 will bring us some hope.

    I hope my call will reach every body concerned about better like, better health, less diseases, and I hope that by the and of 2000 will get this problem solved.

    Many thanks to every body concerned and read my message, and what Iím sure of, is that he found a lot of strange because my disease is rareÖ.

    And a last callÖI canít cover the costs of treatment and travel, so I've never traveled to any country rather than nice, please, please, please.. Iíll be more than happy with your support whatever it is, even some hope in a line or tow...

My address is.

    Rawaa Tawileh, P.O. Box: 14518-Damascus-Syria

    E-mail: anas@4nit.com

 

 

 

Ehler-Danlos Links:


Collagen Diseases:
http://www.pharmacy.ohio-state.edu/homepage/courses/ph461/lecture_09/tsld016.htm

Discussion:
http://www.emergentology.com/Case11.htm

Ehlers-Danlos National Foundation:
http://www.ednf.org/

Ehler-Danlos symptoms and treatments:
http://www.marge.com/bboard/messages/1083.html

Ehlers-Danlos Support Group:
http://www.atv.ndirect.co.uk

Ehlers-Danlos Syndrome:
http://www.orthop.washington.edu/Bone%20and%20Joint%20Sources/ezzzzzzz1_1.html

Ehlers-Danlos Syndrome Menu:
http://neuro-www.mgh.harvard.edu/forum/EhlersDanlosSyndMenu.html

Introduction to collagen:
http://xraywww.chem.uva.nl/franks/collageen/paginas/h1p1.html

Metabolic Disorders:
http://www.medstudents.com.br/metdis/metdis7.htm

The most important connective tissue diseases:
http://xraywww.chem.uva.nl/franks/collageen/paginas/app1.html

Vanderbilt University Medical Center/Ehlers-Danlos Syndrome:
http://www.mc.vanderbilt.edu/peds/pidl/genetic/ehlers.htm

 

 

Thank you for your visit and support