Case Studies and Proposal

My focus for this week was on finishing my proposal and thinking of people for my case study. I finished the proposal and turned it in on Monday. I am fairly confident in my proposal, and should be seeing as I wrote one last year.

This weekend I plan to contact the prospective people for the case studies. I just recently found out of another person who was diagnosed with EDS this week so I will try to contact him this weekend! I am sure the others are willing to participate in the studies. I am also going to talk to Dr. Henderson about helping me learn to write one.

Relation of Paper and Focus

Relation of paper and project:

I decided that I am going to do 4 case studies for my paper. This is a good way to show specific people’s experiences and how EDS affects their daily life! I am really excited about this! I have the 4 people picked out and am going to contact them this week for their permission. Dr. Henderson is going to email me some papers he and other doctors have written and I will contact Dr. Francomano today. Since I will be returning to Maryland in less than a month, I can speak with both of them in person and get their help in writing the case studies.

Focus:

I am very interested in my project because it is my life! Ehlers-Danlos is something that I will have to deal with for the rest of my life. It plays a major part in everything that I do every single day! I feel that it is my responsibility to share this with others so that they won’t have to go through many things that I did! This project is not just a project for my senior year, it is a project for my life. After I graduate, I plan to continue working with Dr. Henderson and the Chiari and Syringomyelia Foundation.

I am doing a lot of work on my project so I will probably post again this week. I am very excited about my upcoming plans and sharing them with all of you!

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!

My Plans and Research

I have been doing a lot of work this week on my project! It has mostly consisted of emailing Dr. Henderson and talking with Mrs. Howard. I have also been doing a lot of brainstorming ideas for CSF and dance projects

Work with Dr. Fraser Henderson

Dr. Henderson and I have been discussing some of the things that I can do to help him accomplish several projects with people with Chiari and EDS. We are still trying to figure out a plan for those “projects.” I am not quite sure what all I will be able to do.

Some of the “projects” are:
~Helping him write a case study about me, which he will publish in a medical journal
~Writing up a list of tips that have helped me recover so quickly
~Publishing the tips, possibly on a website or in a booklet form
~Helping him set up a website for his practice, including a section for Chiari patients
~Answering questions for his new Chiari patients and giving them advice and tips
~Speaking at the Washington DC Chapter of CSF’s meeting in October

In helping Dr. Henderson write the case study, it will also be part of my research for my paper. This is something we discussed at our last meeting in the beginning of August.

I have shared many of my recovery tips with several patients of his, but he would like me to write them out so that we can give people a hard copy of them. This will also be something good to have to give to members of CSF who are in need of surgery or are still recovering from surgery.

During one of our phone calls, Dr. Henderson and I discussed the possibility of making a website. His practice does not currently have a website, which is something that would be very helpful for it to have. His practice is currently expanding (or rather about to explode) as he is becoming more well known for doing Chiari surgeries! This is very exciting, but also means that he needs a way for patients to find him. For Chiari and EDS patients, the internet is a very important tool as it is very difficult to get information on these “rare” conditions from most doctors! A website for his practice would make him easier to learn about and get in contact with.

I have already started talking with some of his patients and giving them advice. This is part of what I would like to do with the Carolina Chapter of CSF and for a career.

Dr. Henderson has asked me to speak at the meeting of his Chapter of CSF on October 13 in Lanham, MD. I am currently working on my speech for that.

None of these things are set in stone but they are some of the things that we would both like to accomplish. I should hear from him some time this week about what we will start working on! I will give more information about all of this as I hear more about it.

CSF

As far as my own projects go, I am continuing work on starting up the Carolina Chapter of CSF. I am working on fundraising ideas and brainstorming who should be on the board. I have many people in mind and I will be contacting them within the next few weeks.

When I return to Bethesda in October, I will be meeting with Dorothy Poppe who is the Executive Director of CSF. We will discuss what I have been doing for the Carolina Chapter as well as discuss ideas of things that I can do. I am very excited to meet her and hear her ideas!

Dance

I have discussed a few ideas with Mrs. Howard this week. They include doing choreography for the Advanced High School dance class, and taking a group of students to perform outside of school.

I am planning on choreographing at least one dance for the Winter concert. I am in the process of finding songs. This sounds really easy, but it is a big decision that takes a while. In class I have been working on a choreography project with Kevin and Sarah. This is really exciting for me because I haven’t been able to choreograph and dance completely in almost 10 months! I am very excited to get back into choreography and getting my creative juices flowing!

Mrs. Howard took a group of dancers to the School for the Deaf and Blind last year. I was unable to dance at the time, but I decided to go and just watch. It was so amazing to see how much the students enjoyed being able to get up and dance! I want to take a group back there this year and do the same! I would also like to take a group to the Pediatric floor at Regional and possibly to the Charles Lea center. I feel that it is important for people with disabilities to have some form of creative movement. It was very frustrating for me to go from one day dancing for several hours at a time to the next day barely being able to walk. Dance was always so therapeutic for me and it took a while for me to figure out how I could be involved in dance despite my “disability.” I would really like to visit each place at least once this year.

Research

The “big question” I hope to answer in my research paper is: “How does Ehlers-Danlos Syndrome affect daily life?”

As you can imagine, I have done a LOT of research on this over the past year after getting diagnosed! I have learned so much, and I am actually excited to put all of my knowledge into a paper! What is even more exciting is, a close friend of mine has decided to also write a research paper on EDS for one of her college classes! I was very excited, and touched, that she would do a paper on EDS! This is a great way to spread awareness! We are going to start researching this week! I don’t think that I will have difficulty finding resources. I know of many medical journal articles and also have many doctors that I can contact to ask questions!

I apologize for such a long post! It has been really helpful to get all of my ideas written out on paper! I didn’t realize how much I am working on! It seems like too much, but I have more free time than the average senior since this is my second year! I believe that I can accomplish all of these projects by May! I am very excited about all of this and can’t wait until I can work on it more!