May 25, 2011
by marfmom
0 comments

Kaitlyn’s Story

Kaitlyn is one of the fabulous teens I have the privilege of working with. She currently serves on the Teen Council, a subcommittee of the National Marfan Foundation’s Board of Directors.

My name is Kaitlyn, I am 16 years old, and I have Marfan syndrome. I have to admit, when Maya asked me to do a guest post, I was incredibly excited. The chance to share my story is always a privilege.

When I was around the age of 4 or 5, I was diagnosed with Marfan syndrome. My mother had also been diagnosed, but due to having less medical care and education that she needed, she passed away in 2006 of an aortic dissection. There were several generations of family history with Marfan involved in my diagnosis. I always thought that there weren’t that many people with Marfan syndrome, so I had never met anyone else with the disorder, apart from family members. I certainly had never met someone close to my own age with Marfan syndrome.

I had never been extremely educated in what Marfan syndrome was. My parents had always taken me to the right doctors, and it had just been something that had always just been there. A little over a year ago, I was curious to learn more about what exactly Marfan syndrome was. So I got on my computer, and began searching for answers.

I found the NMF website pretty quickly. It had so much information. I learned certain minor characteristics of Marfan that I didn’t even know could be explained by Marfan syndrome. I saw all the social and medical advice on the Teenspace. Finally I found my way to the NMF’s social networking site, NMF Connect. I began talking to and meeting people through this site. I met several other teenagers with Marfan Syndrome, or related to people with Marfan syndrome. I made many new, fantastic friendships.

Soon, after talking to different people, I found out about the NMF annual conference. I found out that it was going to be in Houston, Texas. Houston is not too far from where I live My family couldn’t afford the expenses of the conference, so we applied for a scholarship. The NMF graciously accepted my dad & I, and we attended the 2010 NMF Annual Conference.

Through the conference, both my dad & I received so much education. We forged new friendships, and deepened ones already created through NMF Connect. It was one of the greatest experiences of my life, and I am sure my dad would say the same. We are extremely grateful to the NMF for everything they do for the Marfan community.

What I have to leave you with, is a reminder. A reminder that if you see signs of Marfan syndrome, talk to your doctor. Seek the proper medical assessments. If you do have Marfan syndrome, it is important that you be diagnosed as early as is possible, so that you can receive the proper monitoring and treatments.

Please, support the NMF by casting a vote for them in the Chase Community Giving Campaign. Any money won will go to support programs that promote early diagnosis.

May 24, 2011
by marfmom
2 Comments

Ben’s Story

Ben and I first met as teenagers at the 1997 National Marfan Foundation conference. The program was small then: just 15 of us. These days he & I co-lead the teen program, which regularly sees 80-100 teens each year.

“Look at those hands!” I’ve been told by my parents that those were the first words I heard after I was born – I know I was there, but you’ll forgive me for not remembering! I was lucky though – as a result of my Mom and Grandfather both having Marfan syndrome, the spindly fingers I carry with me to this day were not really a surprise. In the moments after those words were said, key tests were performed to ensure that this Marfan baby would have a positive start in the world.

Over the last 27 years, since that milestone moment, I’ve looked at my Marfan syndrome in very different ways. I’ve been defiant (“No doctor is gonna tell me what to do. I’m the boss of my own body”), ashamed (“If no one knows, then no one can treat me differently”) and, finally, accepting and even embracing my condition. Throughout, I was always reliant on my family, friends and the National Marfan Foundation (NMF) for guidance, support and all the help I needed.

Besides a support system, I had something very important going for me. As a result of the fact that I had been diagnosed at birth, I was always followed very carefully by my doctors. Each medical issue that arose – small or large – was treated with exceptional care and concern to ensure it didn’t become something worse. Without the awareness of my condition that an early diagnosis made possible, I would not have been as well-equipped to make the best decisions about activities and be as effectively monitored. Without that, there is no way I would be as healthy as I am today.

Thanks to the NMF I know there is a group of people – doctors, parents, kids, counselors – friends who are there for me and my fellow “Marfs.” I know that all of living with Marfan syndrome and related disorders have hope for a better future. I know that, should my kids have those same spindly fingers that their Dad has, their life will still be filled with numerous wonderful possibilities. The NMF helped “teenage” Ben recognize that he was not alone. The NMF has helped “adult” Ben live a healthy and productive life.

If all the NMF did was save lives, that would still be extraordinary. But, for this community, that is not enough. If we are going to live longer, we also have to live better. Early diagnosis is step one, but all those in this exceptional community work tirelessly to ensure that a diagnosis is not the end of the journey, but a new beginning. And sometimes, as I’ve found in my life, those new beginnings lead to beautiful discoveries and a life truly worth living.

Please, support the NMF by casting a vote for them in the Chase Community Giving Campaign. Any money won will go to support programs that promote early diagnosis.

Ben & his lovely wife, Lindsey

May 24, 2011
by marfmom
0 comments

Erin’s Story

Today {May 22} is my thirty-first birthday. I am the eldest of four – and the spontaneous mutation of the lot. I like to say ” I was the only one who was planned- and this is what they got!” I was lucky in that my Dr. V noticed my oddities very soon and an ophthalmologist confirmed the worst. I was diagnosed before I was two years old. Marfling became almost my almost invisible friend. When asked to be part of games as a child I would say either Marfling says no or ‘my cardiologist frowns upon such things- sorry’. When I was young unless it became a need – I never mentioned MFS to others – it was too complex to explain. But now as I’ve gotten older -Marfling and Marf are two nicknames I answer to gladly. I explain all about it to the curious -and if I suspect it in someone I know – I mention it openly. I have nearly every symptom that you could have – luckily beta blockers since I was five have protected my heart. But the scoliosis,joint displacement, dislocations, epilepsy, fibromyalgia, kidney, gall bladder, and eye surgeries and more came along. As well as emotional troubles – anxiety and bipolar disorder. But now I survive it all and share whenever I can. Literature , verbal support, hope for those younger than I. I have degrees in childhood development, education, English Literature – and I use them all to help others. I am not a Marfanoid creature – I am a MARFLING – which denotes how fragile yet strong I am. I have mein klein broer Alex Broadway in South Africa – I believe every Marfling has a duty to find a younger Marfling who is coming to terms with this disease and give them the most important weapon we have – HOPE.

I am a daughter, sister, aunt, friend and Marfling. I am an author, poet, actress, and constant community volunteer, and a Marfling.

Being a Marfling shall hopefully never stop me – save from driving and being and astronaut. [Which is fine by me]

I store my writings at http://poetryandprose-end.webs.com/ and I build websites like www.acac-theater.com and http://lpmrailroad.webs.com/

Erin N. Dalton –
Spontaneous Marfling – Virginia =)

Please, support the NMF by casting a vote for them in the Chase Community Giving Campaign. Any money won will go to support programs that promote early diagnosis.