I have Marfan Syndrome and i was wonderng if anyone else out there has that? If so how do u cope with it, for there is no cure?
I want to thank Lisa C for the help i like a person who likes to help others...I checked out the web sites she gave me and i joined the chat...Thanks Lisa! God Bless!
Dear L., I have Marfan Syndrome also. My uncle died in 56, my father in 60, my aunt in 2007. I am not trying to scare you by this news. One of my sisters has it, and my son is typical Marfanoid. I would like to email you if I could. We can exchange more info and encouragment. God Bless you now and always, C. ____@____.com
L. have you tried a nutrition plan. I am in the health and wellness and though I am not familiar with your issue I wonder if it is possible to get help from a natural supplement. We have had remarkable results in other areas of issues that can not be cured....they can be managed. Good Luck. I would love to talk to you about it. Go to livingwithsolutions.com and check it out.
S.
Hi L.,
I don't have Marfan Syndrome or know anyone who does but I couldn't stand to see the zero comments so I got on here and did what I like to do best. I googled. =) Here are some websites that might be helpful.
http://www.io.com/~cortese/marfan/
http://health.groups.yahoo.com/group/marfans_support_and_...
On april 12th there is a March in Cleveland. I realize this is late notice, but this is the contact information so she might be close to you or know support groups in your area.
____@____.com
I hope this is helpful. You are in my prayers.
L.
L.,
I don't have Marfan Syndrome but my sister works with people who have it all the time. She works as a genetic counselor at Cleveland Clinic. I remember her telling me they are either starting or started a support group... maybe, I can't remember it's been a while ago. I would encourage you to check out a genetic counseling program at one of the local hospitals. I think they could hook you up with more resources.
Best of luck!
RJ
I don't have Marfan's I have Ehlers-Danlos Syndrome which is similar but not similar if you know what I mean. Being around doctors alot you probably do. Anyway it to is genetic and noncurable and I passed it on to 2 of my kids before I even knew I had it since it was before there was a genetics test for it. How do I cope? Some days I do and some days I don't I really hate to tell you. My husband couldn't handle it at all since it is debilitating and I am single now. I surround myself with people who understand. I read alot. I stay as healthy as I can to not add to the problem. And depending on where you live there might even be a local support group. Contact your closest Childrens Hospital genetics Department and ask them.
J.
Hi L.,
My name is M. V. Unfortunately, I do not know anything Marfan Syndrome,however my husband and I are also plaqued with many illnesses...etc.diabetes,heart disease,arthritis,copd and fibromyalgia to name a few. The fibromyalgia was the hardest one to diagnose and treat. It can be so frustrating. Do you ever find yourself depressed over your health issues ?
Using eco-friendly products have seemed to help though. I enjoy using Melaleuca's products for my home and body.Let me know if you would like more information.
I'm 41 years old and between my husband and I we have 3 sons. My stepson gave us our first grandson recently. He and his family live in R.I. Our 19 year-old lives in central Ky going to school and work....And our 15 year old is still at home of course. In November, Fred and I celebrated our 20th wedding anniversary...
May You Be Blessed With Better Health,
M. V.
Melaleuca-The Wellness Company
I have Marfan syndrome. I see you're in Ohio. There are groups of other Marfan patients in Columbus, Cleveland, Toledo, and Dayton. You can get information on these by emailing the National Marfan Foundation's volunteer coordinator Kathy Jeffers: ____@____.com National Marfan Foundation is a great place for information and support. There's also a social networking site called NMF Connect: http://nmfconnect.marfan.org. I recommend checking it out! I run a blog about being a mom who has Marfan too, and the address for that is http://marfmom.wordpress.com, if you want to chat more. There are so many resources available to help you cope! Oh, and I forgot the NMF's website: www.marfan.org. We have conference once a year too! Good luck!
