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Welcome to the Marfan Syndrome Support Group website. We hope you will find our site helpful. It is our hope that we can show our support to you and your family through friendship and people to listen.
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Marfan Syndrome Support Group Newsletter. Read about the...
- About
Marfan Syndrome is a genetic Connective Tissue Disorder,...
- Contact Us
County. Contact Name. Telephone. Cork. Petronella. 021...
- Accessibility
Marfan Syndrome Support Group takes accessibility very...
- Caroline's Story
Antoine Bernard-Jean Marfan (June 23, 1858 – 1942) was a...
- Petronella's Story
I have found that although a lot of Marfan Syndrome suffers...
- Martin's Story
We got in touch with the Marfan Syndrome Association in the...
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Marfan Syndrome is a genetic Connective Tissue Disorder, discovered by Antoine Marfan, a French doctor, in 1896. Connective Tissue is the tissue that binds our bodies together. Being genetic, 75% of Marfan patients have inherited the condition from a parent and 25% are new mutations.
- What Is Marfan Syndrome?
- Other Conditions That Are More Common with Marfan’s Syndrome
- How Do You Get It?
- How Is It Diagnosed?
- Why Is It called Marfan Syndrome?
- Famous People Thought to Have Marfans Syndrome
- Is There A Cure? How Is It Treated?
- The Future?
- Where Can I Get More Information?
Marfan Syndrome is described as a connective tissue disorder. Connective tissue is the cement that holds the body together and is present in every organ, blood vessel, bone and joint in the body. Connective tissue is made up of specialized cells and fibres that bind parts of an organ, blood vessel or joint together. For example if we look at the in...
HerniasA hernia is most commonly noticed as a lump in the groin area. It is due to a weakness in the connective tissue of the muscles underneath the skin. A small outpouching then forms, which produces a lump. This may need surgery especially if the lump is painful. Hernias are common in general but are more common in those with Marfan Syndrome. Cr...
Marfan Syndrome is due to a defective form of a fibre called fibrillin in the connective tissue in the body. This is due to an abnormal form of the fibrillin gene, which produces fibrillin in the body. You can get this abnormal gene either by: Inheriting itfrom one of your parents who has to have Marfan Syndrome themselves (the most common way that...
Unfortunately, many people in Ireland are only diagnosed when they present with a serious complication of the Marfan Syndrome. This is because many of the manifestations of Marfan Syndrome such as being tall are common in the general population, and a person may not have many of the “classical features” of Marfan Syndrome. There is no “Marfan Test”...
Marfan Syndrome is an inherited disorder of connective tissue. A French paediatrician called Antoine Bernard Marfan (1858-1942) was the first to describe the characteristic features of this condition. At a medical conference in Paris in 1896 he presented the case of a 5 year old girl called “Gabriel P” who was unusually tall and had long slender fi...
Sergei Rachmaninov (1873-1943), classical composer, thought to have had Marfan Syndrome. Hands of Segei Rachmaninov. His long fingers, thought to be due to Marfan Synrdome, gave him and exceptional reach on the piano. Niccolo Paganini (1782-1840), composer and violinist. His long fingers, thought to be due to Marfan Syndrome gave him an extraordina...
As Marfan syndrome is due to a defect in a gene, there is no way of repairing this gene yet. Much research is underway at present into genetic conditions such as Marfan Syndrome, and how to correct the defective gene. However, many of the problems that occur with Marfan Syndrome are eminently correctable. Early diagnosis and regular follow-up for m...
The defective fibrillin gene that causes Marfan Syndrome was discovered in 1990. Since then there have been massive developments in our understanding of what happens to the body with Marfan syndrome, and how the complications develop. This better understanding through research is suggesting new treatments for the common complications that occur, an...
The Marfans Research Foundation provide information on many aspects of Marfan Syndrome as well as links to other sources of information and useful websites at www.marfansresearchfoundation.ie. The Sponsors of the Marfan Syndrome Information Booklet are:
Marfan Syndrome Support Ireland. 1,418 likes · 21 talking about this. Support group for patients, families and friends affected by Marfan Syndrome and Loeys-Dietz Syndrome in the North and South of...
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We got in touch with the Marfan Syndrome Association in the UK and we discovered that there were a number of people in this country affected with this condition. We contacted them regarding setting up a Support Group in Ireland.
Marfans Research Foundation originated in the Mooncoin / Kilmacow area in County Kilkenny in Ireland. It was set up by family and friends of the McGrath family from Kilmacow who are directly affected by Marfan Syndrome.
Marfan Syndrome Support Group provides information and support for people living with Marfan Syndrome and their families. Visit Website SEARCH OUR INFORMATION HUB
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