Marfan Contacts N-O

Added October 8, 2001

Natalie, Orrville, OH, USA
We recently found out that our daughter Natalie has Marfan Syndrome. She is 14 months old. My husband also has it and his father passed away from Marfans at the age of 37. We are now adjusting to having a toddler with glasses. So far her heart is ok which we are very thankful for. I was wondering if there was a support group in our area for people with Marfans.
dnfisher@aol.com

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Christine Nelson, Green River, WY, USA
I'm christine nelson age 38 white female. i was recently diagnosed as having marfans 2 years ago. i am not certain who has or had marfans in my family as of yet. I have some heart problems that maybe or is sign of having marfans. and i also have features of heart valuve's trouble and i have also signs of bones-skelton deforminoties also. i am kinda of tall person and skinney features too. i'd like any info. you can give me about marfans and some friends to contact or talk too for advice etc...... you can contact me on line by my e-mail address.

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Nikolas, Athens, Greece
helow my friends.
i am 38 marfan man,i had assending aorta surgery in july 1997 and i want to speak with all of you. I am from greece.dont worry be happy. ps.my english is not very well, thank you.

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Heidi Noble, Niles, Ohio, USA
Hi all! My name is Heidi. I have a ten year old daughter that has been diagnosed with Marfans. My husband just recently passed away at the age of 39 from complications due to Marfans. My four year old daughter will be assessed in November at the Marfans Clinic in Cleveland, Ohio. My husband had 4 open heart surgeries. I would love to hear from anyone who wants to exchange information or just chat. I have alot of experience. Now it starts over with my daughter. She has been watched for Marfans since she was born. She has an E-mail address as well, and would dearly love to hear from other children afflicted. She knows no other children with Marfans. Please write if you have children that are looking for a pen pal, or is it E-mail pal now? Thank you very much.

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Nora, Singapore
Hi, I'm 38 year old female married with 4 children (9,6,5,2) diagnosed with Marfan at age 34. Actually, I felt I had it since young. My 1st child,a girl, was diagnose to have mitral valve regurgitation. She's developing the syndrome I think. My other 3 children, sons, look ok at the present moment.I need to have my mitral valve replaced soon. Anyway 1) How do we know a child or adult has marfan ? 2) How good can a mitral valve replacement last ? Anybody who has gone through the surgery, please contact me. Take care always.

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Norma, Scott, Louisiana
hi, i'm a mom with marfan (3rd Gen.) with a 4th gen daughter who 13. i have marfan severly and my daughter just starting to have problems.

my medical persons here are a joke, they know i have several form of heart disease now and just last week sprung 2 different leaks in the aortic valve on different days they patched me and sent me packing for home. it is diolated and has been for some time. i'm really angery cause i have severe chest pains still and have lost use of my right arm but these guys keeps saying everything fine. my company just let me go 6 months ago cause of my health now having to deal with the state hospital and teach them while in their residency years.

i am not enjoying being a practice experiment for the state of louisiana they shift me between 3 hospitals cause nobody wants the responsiblity and book learning required to treat this disease.I bring flyers and lecture to help identify whats happening to me and they call me a hypoconderact. Worst part is i am unemployable due to my present health but can't even get any kind of disability to raise these 2 kids on. its become a game of betting how long before company's let me go due to fainting or heart related problem or other ailments.

it wasn't always like this i just turned some imaginary corner and boom everything went. i'm 39 trapped in a old persons body now. just walking across the street makes me breathless. wanting someone to share info and know someone cares.

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Odile, Pierrefonds
Our daughter Marianne was diagnosed as having Marfan's at age 4. We knew from birth that something was amiss but no one would listen. I was labelled an over anxious mother and had to lose my temper at a professional before they actually took a good look at her. We now are getting good help for her.

Marianne attends kindergarten classes speaks english and german, is beginning to pick up french. There are idiosyncracies in her learning pattern that have us wondering.

These have always existed but now that she is in school it is more apparent. She is a bright child, very sensitive, very lively and affectionate. She seems to have a problem with perpendicular lines and spacial relationships but in a strange way. She can't draw triangles has a very hard time recognising them when mixed with other shapes yet she can write the letters M, N, A, V.

We were told that some Marfan children encounter learning difficulties in school but our pediatrician can't give us details. We had just assume that the difficulties would be caused by the number of days missed because of hospital visits, therapy and various doctor appoinments. Can anyone inform us on problems encountered with learning in Marfan children so we can help our daughter and eliminate some of the guess work?

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Hola Me llamo Josep Mª soy de Barcelona (Spain). Tengo 32 años Practicaba fisicoculturismo y a los 25 años tuve un aneurismo aortico, me intervinieron pero la intervencion no era definitiva, el pasado 16 de Julio 97 me reintervinieron y repararon toda la lesion, desearia contactar con marfans de españa.

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My name is Marsha Orr and I live in Miles City, Montana. My daughter and I both have Marfan Syndrome. We would like to add our names to your list of people who would like to hear from other people who have it. Sincerely, Marsha & Jennifer Orr