Article in Maryland

I finally found a link to the article in the hospital newsletter. This article was beautifully done! It was mailed to every household in Price George’s County, MD, which is 230,000 homes! I have given Mrs. Zion a copy if anyone would like to see a hardcopy of it!

http://www.csfinfo.org/sites/default/files/mackenzie_mathis_story.pdf

Pictures of Maryland

These are some pictures of some of the people I love in Bethesda!

Dr. Henderson and me after tethered cord surgery

My favorite nurse Netty in my hospital room after fusion surgery

Elayne, a nurse in Dr. Henderson's office who also has EDS

Kyri, who wrote the article about me for the hospital's newsletter

Dr. Henderson amazed that I can stand on pointe

EDS's effect on my hand joints

Netty came to see me speak at the meeting in October

Preparing for Christmas Break

We still have not heard back from the producer, so we are assuming it will not happen soon.  The hospital kept the tickets they had bought for us and has asked that we use them the next time we come up.  It was very generous of them and we are very grateful for the tickets.  We don’t know if they will want to do the story at a later date, but we are hoping!

Kyri, the woman who wrote the article for the hospital newsletter, sent me more copies of the article.  I will put a copy in the senior lounge.  I still haven’t figured out how to post it here but I will keep working on it.

I spoke with Dr. Henderson this week as well.  I will be spending a week up there over Christmas break so we will have lots of time to work together on his website.  Mom and I have been doing research on how make website for him and looking at what other doctors’ websites look like.  I am really excited to be able to meet with him and get this started.

Lots of Waiting

This week, I feel like I have not accomplished very much. It has been a lot of waiting on my part. We are waiting on the producer in DC to get back with us on a date for the interview. They have to work around Dr. Henderson’s hectic schedule so I have to be very flexible. I am completely okay with this though! I am just thankful to have these opportunities!

On Tuesday we received the article from Maryland. It turned out beautifully! We have asked for more copies because we only have 3. I am also trying to figure out how to post it on this blog. It shouldn’t be too complicated though.

First Article Published

Today the first article about my story has been published! It is very crazy to experience this, especially when I think about where I was this time last year! If someone had told me then, “Mackenzie, this time next year you will have had 2 surgeries, be pain-free, and have an article published on you in the Spartanburg Herald Journal,” I would have laughed in their face! It is all so surreal still and I am so grateful for the many opportunities God has given me through all of my struggles and pain!

I have been so blessed in the past 2 years and am so excited for the next years to come! This week we should be receiving the article from Maryland and finding out when we are filming for the TV station up there. I have already met 5 people this week with Chiari or EDS and 2 of them are because of the article! It is great to be able to share my story with them and give them advice based on my experiences.

Here is the link to the article:

http://www.goupstate.com/article/20091110/ARTICLES/911101007/1106?Title=Teen-is-walking-tall-again

More Opportunities

I had a great trip to Maryland this week and I am very excited to go back on Monday! We were able to talk to Dr. Henderson a lot and share some ideas with him. We haven’t settled on any ideas, but I a writing up proposals and estimated costs for them. I will write more about them when I have some details. I will get to talk to him again this week about the plans for the meetings and other ideas we have.

Today I did an interview for the Spartanburg Herald Journal. It was pretty neat to be able to share my story again and to know that it will be shared with others! It was also really good practice for the interview in Maryland next week! I am really excited, but also nervous for that. I am very thankful for all of the opportunities that I have been given!

New and Very Exciting News

I have been talking throughout this week with Kyri, a woman from the PR firm that works for Doctors Community Hospital (where I had my surgeries). She wrote an article on me for the hospital’s newsletter which is currently being printed. She was approached by the CBS affiliate news station in Washington, DC about doing a story on my case. I agreed of course! I am really excited! This is a great way to raise awareness about these conditions since thousands of people who have probably never heard of EDS or Chiari! Hopefully someone will watch it and be able to say “Hey, I have those symptoms! Maybe I should get checked out for that!”

We were hoping that they would be filming sometime while we are up there next week (Nov. 1-3), but of course not! They are filming on Nov. 10, a week after we were planning on coming up there. I talked to Kyri and she said that the hospital would fly me back up for it! I am very excited because it means I get to go back to Bethesda and soon! I really love it there and I will be doing what I am very passionate about! This extra trip will be another opportunity to meet with Dr. Henderson! I am just incredibly excited and feel so blessed for these amazing experiences!

CSF Chapter Progress

Last night I received a phone call from Dr. Henderson. We were able to talk for a while about the first Carolina Chapter meeting. We will hold it in Spartanburg because it is in a good location for North and South Carolina. We hope to have it some time in mid-late January. I am still working on a lot of the detail and will be sending out an email on the Chiari and EDS support group boards to let them know what we are planning. I am also working on the letter that I am sending to the Chair of Neuroscience at MUSC. I hope to finish this by then end of the week as well.

I will be returning to Bethesda this Sunday. I will be able to meet with Dr. Henderson while I am there! I am very excited for the opportunity to go back up there! I will return home on November 3 so I will send my birthday in Bethesda! I couldn’t ask for a better birthday present!

　

Trip to Maryland

I had a great time in Maryland! I feel like a lot was accomplished! We had a great meeting with Dorothy Poppe, the executive director of CSF. It was great getting to know each other and more about each other's story! The CSF meeting was awesome! There were a few speakers in addition to me and they were very informative! My speech went well and I feel like it helped many patients relate with all of the information that was being shared. After the meeting, we had dinner with Dr. Henderson. It was really fun and we actually got some things accomplished! He had the idea of holding an educational meeting at MUSC which is where he did his residency. He knows the Chief of Neuroscience there and has asked me to write him a letter proposing the idea of the meeting. I will start on this right away! I am also going to contact Dr. Godenick about having the educational meeting here! There is a lot to do, but I am very excited!

Proposal Time

My proposal is tomorrow and I am very excited! I enjoy talking about my project and can’t wait to share it with more people! I feel prepared for the presentation and for any questions the board will have!

This week has been very hectic. I have been preparing for not only my proposal, but also my trip to Maryland. I leave Sunday morning and return Wednesday evening. On Monday I have my 3 month post-op appointment with Dr. Henderson. Then on Tuesday I have a lunch meeting with Dorothy Poppe (the executive director off CSF), the Washington Chapter of CSF meeting, and a dinner meeting with Dr. Henderson. At the meeting, I will be giving a talk about my medical journey and experience with surgery this summer. I am excited to have this opportunity to share my story with others and to encourage them in their journeys! This will be a great experience and I will post about it next week!

Preparation for Speech

This short week of school, I have focused on my speech for the meeting in Bethesda. We leave for Maryland next Sunday, October 11. I am very excited to be back and visit with everyone there.

I spoke with Dr. Henderson on Wednesday. We discussed what he wants me to speak about. I will briefly talk about my journey to a diagnosis and treatment. While I am in Bethesda, I will also be meeting with him and the executive director of CSF. We will be discussing my plans and ideas for the Carolina Chapter of CSF. When I return from my trip, I will have much more information.

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!

My New Senior Project

I began my senior project over a year ago, but I had a completely different plan. My original plan was to reach others through dance! I was going to hold 2 dance mini-camps for K4-5th grade, 2 clinics for 6-12 grade, and choreograph several pieces! The goal of all of this was to get experience in teaching dance because I was planning to go to USC as a dance education major. I was really excited about it but God had a bigger plan for my senior project and career!

Now I have a new senior project that still incorporates dance! The goal of my new senior project is to raise awareness and funds for research for my conditions (Ehlers-Danlos Syndrome, Chiari Malformation, and Tethered Spinal Cord). I started working on this last year in helping the Napier family with the Zebra Run. It was a 5K Run/Walk to raise awareness and money for their family to go towards their medical bills. I will continue to work with the Zebra Run again this year.

I am also in the process of starting a chapter of the Chiari and Syringomyelia Foundation for North and South Carolina. This will be a major part of my senior project. I am also setting up speaking engagements with this foundation. I already have one scheduled for October 13 in Bethesda, MD. Dr. Henderson has asked me to speak about my medical journey at a meeting of his local CSF chapter. He has also asked me to help him with many other projects that I will explain more about when I have more details on them! One of the "projects" I have already completed for him was an interview for an article that Doctors Community Hospital (hospital where I had my surgeries) is doing on me. The article will be finished shortly and I will post it here when it is!

In addition to working with my conditions, I plan to continue working with dance! Mrs. Howard has agreed to allow me to choreograph at least one piece for the Spring and Winter Concerts! I am very excited about this too, because I am now able to participate in dance class and can demonstrate my choreography! I am also brainstorming other ideas of how to connect dance and my conditions. I have talked with Sarah about working together on choreographing a group to take to hospitals to work with children and show them that despite their illness, they can dance in some way!

As far as mentors go, I have 2! Since I have 2 parts to my senior project and will have worked on it for 2 years, it made sense that I should have 2 mentors! My mentor last year was Mrs. Howard and she will help me with the dance aspect of my project! My second mentor is Dr. Henderson! He so graciously agreed to help me with this and we are both so excited!

The next step is to start setting up more fundraisers so we can start having CSF meetings. If you have any ideas for me I would greatly appreciate them!