Marfan Contacts H

Robert and Angela Hahn, Ephrata, Lancaster County, PA, USA
My husband is 46 and has Marfans. He is currently batteling with A-Fib, going back and forth with a regular heart beat and A-Fib. His name is Robert. He is on the National Marfans Website homepage, at http://www.marfan.org/list/people/people2000.html We are currently working on making a web page for my husband.
We also have a list called Christians With Marfans. To Subscribe to that list, do this ChristiansWithMarfans-Subscribe It's that simple. Than you can meet Christian people there. Even those who are not Christians are welcome.
Angela Evelyn Hahn

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Ron and Deb Hampe, Hickory, Pa.
Our 5 & 1/2 year old daughter Alicia was recently diagnosed with Marfan's Syndrome. I am gathering as much information as I can on the Internet and from her doctors, but would like to hear from others who either have Marfan's Syndrome or who have children with Marfan's Syndrome. We are interested in joining a support group, if any exist in the South Western Pennsylvania area.

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Jessica Harden, Cullman, AL
I am a 17 year old female looking for someone to chat with about Marfans. I was diagonsed as a small child. I don't have it that bad, and I rhank God everyday for that. Please e-mail me sometime. And put Marfan as the subject please. Thanks and God bless Love Jessica Hope to hear from someone

I would like to give lots of thanx to this site. I have found so many people that exist with the same disorder I have. I thought I was the only teen that went through these everyday problems. I have met my best friend for life through this site. And of course he's a guy. We have so much in common. I hope to hear from anyone that would like to talk. If me and this guy ever get married in the future I will make it a point to invite everyone. I would like to have this huge get together for everyone that has Marfans and thier families too. I love all you guys and I hope everyone the best in the future. Bye for now but not forever. God Bless. Love Jessica

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Carl J. Hautmann, Annapolis, MD
I am a 31 yr old marfan patient. I am currently being seen at Johns Hopkins by Dr.'s V. MacKusick, and M. Wright, as well as Dr. P. Tong for my eyes. I participated in Dr. N. Ahn's research study for the spine. I am curious to tlak with people near to my age that have had or are going to have the heart surgery. That is something I am a little apprehensive about since for me it could happen in the not too distant future.

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Matthew Haverty, Queens
Hi
My name is Matthew, I am 23 years old and I was diagnosed with Marfans when I was entering High School. I am thankful I had a doctor who picked it up. So far I been living a normal life and I still get yearly checkups. Anyway I still havent found anyone to talk to about it and hwo there life is. Seems that noone around me has it but i would love to meet new people. I live in the NYC area so please fell free to drop me a line from wherever u are. I will respond. Just make sure it has something in the subject that I will look at....god knows i get tons of junk E-mail from alot of places. I hope to hear from you soon

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Chris and Pam Heaney, San Jose, CA
I'm 42 years old, was diagnosed at age 4 after my father die, probably from an aortic dissection. I've been involved in Marfan Support Group since the late 80's, in Los Angeles and San Jose.
I work for a high tech company, Cadence Design Systems in a technical sales role. Pam has also had a long career in high tech companies, but recently traded in her computer for a pair of scissors and is now in school learning dog grooming. We're hoping to both "retire" from the high tech, high stress world in 2 or 3 years and find a more laid back lifestyle. My education is in physics and pyschology and I have a Masters in Business. I'm also a Certified Massage Therapist.
I've had a whole range of surgeries on my eyes, back, heart, etc. I've helped a number of friends through their surgeries. I'd be happy to talk with others who are looking for first hand expriences on successfully adapting to Marfan Syndrome.

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Heidi, New Zealand
I'm 18 year old female..just wanting to talk to anyone else with marfans
westonheidi@hotmail.com

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Juha Heikkinen
Hi! My e Mail is . I am 37 years old and I live in Finland. I have marfan.

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My name is Susanne and we would like you to please add our name and address to your pen-pal page.
I am 35 years old and I am the president of the Marfan's support group here in Brisbane, Queensland, Australia. I have two children with Marfan's and my third child could have it too - the doctors can't say yet. My daughter, Lauren, aged 10, has Marfan's and she would like to have a pen-pal too. My husband died during his third operation having his abdominal aorta replaced. He had already had his ascending aorta replaced and his thoracic aorta too. He had incomplete paraplegia after his second operation and vocal chord paralysis.
It is difficult bringing up kids with Marfan's, not having it myself so I try to understand what they are going through. I would love to hear from any and all about your experiences. We can all be of support to each other. Please write to me.
Susanne )

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Deanie Henderson, Toronto, Ontario Canada
My daughter and myself were diagnosed a year and a half ago with Marfan. I have since become a Director of The Canadian Marfan Association. My daughter Ashley is 12 her e-mail is schmooie55

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Tammy Henderson, Spokane, WA, USA
My son Joshua was born with infantile marfan syndrome. For him this meant that he was born with orthopedic problems. By 18 months he was wearing a Boston brace for a 24 degree curve. He now wears ankle foot orthotics and is very active. He will continue to wear the Boston brace until he stops growing.

His marfan syndrome is a spontaneous mutation and he is the first in our family. So we have had a lot to learn. His aortic measurements are on the large side of normal and have maintained. He is on beta blockers. He has had bi-lateral hernia surgery which has seemed to hold and 2 yrs ago he had both lenses removed because of dislocation. His vision has greatly improved.

After going to the Stanford NMF Conference in '97, I started a support group here in Spokane and we've been getting together off and on since then. Being able to support others during very stressful times and being supported is such a blessing.

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Claude J. Hensley, Asheville, North Carolina
I believe I have Marfan Syndrome as I have many of the symptoms (very loose joints, back problems, small, loose jaw, large eyes, etc.) I am very concerned because my beautiful, wonderful grand daughter died at 4 months of age from SIDS and I would like to know if this could have been Marfan as well (she looked just like me and also had the long fingers and small jaw and very large eyes.) I am concerned about any other grand children my sons will have in the future. I would appreciate any help you can give me. God Bless You...Claude Hensley

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Dana Herring, Warren, Arkansas
Hello! I've been diagnosed as having Marfans when I was ten. No one else in my family has it that I know of. I'm a pre-med major in college. If you have any questions or you just want to write, drop me a line.

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Chad Hill, Manchester
i just been to the doctor and they told me i had marfan syndrone. i'm 31 years old and wonder about the treatment and life expectly with someone with this syndrone.thank you

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Hello, We are two swedish women doing a medical project on Marfan Syndrome. Due to the lack of information in the swedish libraries, we have chosen to find are information here on the internet. We need general information on Marfan Syndrome, and would be pleased to hear some personal stories from all over the world. Please tell us how you were diagnosed. Do you feel that you get enough information in your country? Does the Marfan Syndrome effect you in you daily life ? Feel free to send us e-mail.

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FERN and SALETA HOPKINS, PENSACOLA, FLORIDA USA
Hi everyone... I'm FERN, and I am the mom of a 13yo daughter.. SALETA.. who just a week ago was diagnosed with Marfan's. She has some of the characteristics....Scoliosis, which she was diagnosed with at age 4.... arm span longer than she is tall.... mitral valve prolapse (which the Dr. says isn't too bad right now)... long fingers..... Since we are so new to this, I haven't really responded to anyone else's posts about Marfan's... I know that all of you know more than I do at the present time. I have lots and lots of concerns about her condition... mainly, that I don't really know what to expect next. I haven't told her everything that I've learned.... I want to let her digest each piece of info at a time... don't want to scare her.
If anyone out there has ANY advice, please feel free to write to me.... God bless us all -D
My web site http://hometown.aol.com/awildweed/myhomepage/index.html e-mail

PS I recently found the following link and thought it was beautiful http://members.aol.com/SueBell202/Mountain.htm

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Freddie R. Houston, Ocean Park Washington, United States
My name is Freddie Houston, I allready have an add on this sight but A few things have changed. I was diagnosed with Marfan's when I was about 8 years old after my mom died of a ruptured aortic aneurysm. I have had many surgery's and 4 or 5 aneurysms now, 2 of which ruptured. But I am still here, so for all of you who are worried about aneuysms rupturing, I'm living proof that you can survive them, and I'm sure there are others on this sight with the same story. I have had all of my natural aorta replaced including the arch, except for a small peice still in my stomach,, I am going in for an angiogram on the 8th of december 98 to see exactly when it needs replacing, My cardiologist said it will definately be within 3 months, but I'm expecting it to be around christmas time. I have heard from so many people with marfans through this sight and am Very gratefull to Jeanette Navia for putting up this page,,, If anyone has any question's or just want to talk I'm allways available,,, I have gained so much from this sight so feel free to write me at any time.... Thank you,, bye...

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Kelly Hunger, Batavia, Illinois
i have recently been diagnosed with marfans. i am 26 years old and lost my 22 year old sister to it 3 years ago. i dont have the heart problems (yet) but i do have some of the other symptoms. besides losing my sister i must now deal with the same situation.
if anyone is interested in writing i would love to chat with others about how difficult it is to deal with this situation.

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Rachel Hutchinson , Frome, Somerset, United Kingdom
I am a 30 year old girlie who was diagnosed with Marfan Syndrome following a fall over my pet house rabbit in October 98 when I injured an elbow. I still have a lot to learn about Marfan Syndrome and I am still waiting for tests to determine how it effects me. By the look of my father's physique I think he has Marfan too but he has never been formally diagnosed. I would love to hear from anyone affected in any way by Marfan. I am married to Gaz and have no children. I am interested in Sci Fi, horror and action movies, music, food and wine, walking in beautiful countryside and anything to do with my Japanese hero Godzilla. I'm very excited about hearing from you.