I have decided to do another page, relating to all the people out there suffering from marfans. I will put your photos and your stories regarding your journey with marfans, with your permission. If you would like to briefly write out your story, email it to me at kham2601@bigpond.net.au and i shall put it up, so others can read and maybe contact you regarding Marfan's. Thankyou.
1. Jennifer Green - USA :
jenny1971@okmedia.net
I too have marfans but I am just under six foot tall. I am overweight not the classic thin character. I have been diagonosed three times now. i have all other signs of marfans syndrome, but I have to be diagnosed everytime I go to a new doctor. I live in a small town in OKlahoma located in the USA. Not alot of doctors know about marfans syndrome here. I am lucky to have two sons without marfans. I have been told I was selfish for having children, and had my cardiologist to ask me what the hell was I doing trying to commit suicide. I asked him what he meant, and he said it was stupid for someone with marfans to have a baby, it was like commiting suicide. I replied well if a holes like you would have told me about this, instead of saying "you are okay, you can live a normal life" I would have thought about it before. I havent had any surgeries, but now I need a hysterectomy. I get pissed about the marfans, but I go on trying to be normal as I can. I love my life, I hate my marfans.
My Aorta When I was 24, my aorta measured 5.5 putting near surgery. I started having chest pains and waited a week before I went to the doctor. They discovered my aorta was ripped and wanted to do surgery, but because of my age wanted to do more tests to be positive. I spent three days praying almost non stop for God to heal me. I knew I was dying. I felt the touch of the hand of God on my heart. The doctor got to see the gap close up as he was doing a test where they run a tube from your inner thigh to your heart. After that my aorta size was 4.5, the regurgitation is less, and the mitrovalve is no longer torn either.
I thank God for my children, they are my reason for going on. I am going to close, but before I do one last thing I want to share with you. When the going gets rough, God is always there for us. As I send this letter I pray for God to keep you and your children in good health. Hope you have a great day. Smile you gotta friend who cares and shares your feelings.
Please feel free to email me at : jenny1971@okmedia.net
2. Deano - Australia,Victoria
Name: When I was younger I called Bones.
Sex: Male.
Have you got any children from any of your past relationships, that have Marfans syndrome? Don’t know have checked.
What medication are you currently taking for Marfans? None.
What are your symptoms of Marfan’s? Heart Problems
Do you tell people about your condition? No
Did you have to tell your employers of your condition? No, it doesn’t affect my work.
Whats your personal thoughts on Marfans syndrome? Take each day as it comes, and I don’t think about it.
How often do you see your Doctor? Once every 2 years.
DIED: 27th December 2004. Aged 27. Rest in Peace Deano.
3. Kathryn - Australia,Victoria
Name: Kat
Sex: Female.
Have you got any children from any of your past relationships, that have Marfans syndrome? Tristan and jasmine will both have to be tested after puberty as, both have heart murmurs, and jasmine is due to be 6’4.
What medication are you currently taking for Marfans? None.
What are your symptoms of Marfan’s? Lung problems, eye problems, sore joints.
Do you tell people about your condition? Sometimes, if the situation calls for it.
Did you have to tell your employers of your condition? Currently not working.
What are your personal thoughts on Marfans syndrome? I don’t think about it myself, but I think about the possibilities that my children may have it.
How often do you see your Doctor?Every 12 months.
4. Samantha - Arkansas - USA
email addie:
sbever2000@yahoo.com
Sex: Female.
Age: 20.
Height: 5'9 inches.
Hello, my name is Samantha Loy. I live in Fountain Lake, Arkansas. Located in the USA. On May 17, 2003 i will be 21 years old. I was diagnosed with Marfan's at the age of 3 and I've learned to deal with it a little at a time. Like most other Marfan's patients it effected my Heart and eyes the most. My spine is slightly curved, my feet are flat, and my fingers, toes, arms, and legs are longer than normal people. I never really knew much about the disease until I was 17 years old. Then I started checking into things. Before I had always depended on my mom to be sure things were going well. I have in the last 4 years started being more dependent of myself. I see Doctors in the Cardiology Clinic at Children's Hospital in Little Rock,AR. They say that my aortic valve elasticizes little by little, which now sits steady at a 3. They say when it reaches 5 they will talk about doing a graph surgery. I don't really know much about it, but I know that the other alternatives.
If you would like to email me, please do so my addie is :
sbever2000@yahoo.com
5. Shanon Collins
Sex: Female.
Age: 37.
Height: 5'11 inches.
Have you got any children from any of your past relationships, that have Marfans syndrome? No Kids.
What medication are you currently taking for Marfans? Coumadin, Paxil.
What are your symptoms of Marfan’s? All - I am a true Marfan
Do you tell people about your condition? If I need to or they ask.
Did you have to tell your employers of your condition? I usually do because sometimes I need accommodations.
Whats your personal thoughts on Marfans syndrome? Hasn't made my life easier but I think I am a stronger and better person because of it.
How often do you see your Doctor? As needed.
shanonc1@charter.net
