Timeline and Resources

Timeline:

This timeline is tentative. I will talk to Dr. Henderson more about some of the projects he wants me to do and I will update the timeline as I get more information from him.

Resources:

• 2009 Current Medical Diagnosis and Treatment (301, 373, 374, 414)
• American Medical Association- Complete Medical Encyclopedia (498-499)
• The Merck Manual of Diagnosis and Therapy (2381)
• www.ednf.org (Ehlers-Danlos National Foundation’s website)
• “Ehlers-Danlos syndrome with cervical dislocation: An unusual case.” (Case study).
• “Ehlers-Danlos syndromes and Marfan syndrome.” (Report).

Today I went to the library and found a few medical encyclopedias with information on Ehlers-Danlos Syndrome. They were quite frustrating because all of the sections were very brief and left out a bunch of very important information about EDS. I will have to keep looking for more resources. I plan on emailing Dr. Henderson and Dr. Clair Francomano (my geneticist and specialist in connective tissue disorders) and asking them for resource suggestions. They both have written several articles on EDS and Chiari, many of which they wrote together! I also checked out Discus and they have SO many resources containing Ehlers-Danlos. I have not looked through all of them yet, but I will.

I talked with Mrs. Zion today about the possibility of writing several case studies for my research project! I loved this idea! I thought about writing a case study on 3 other people (in addition to the one I will be writing on myself) from people of different age groups and genders. I could write one on a teenage boy, one on a woman in her 40’s, and one on a young girl. I have noticed the differences in how EDS manifests and when the onset of major symptoms start. Each of the people I am thinking about have difference in both! I would really love to do this because it would not only be very interesting, it would be helpful for many doctors to read.

I am actually very excited about my research project! It is so interesting to me and I love learning more about this condition I will have for the rest of my life! I can’t wait to learn more!