Getting to know more about rare disorder

Siyabonga Africa

Siyabonga Africa

Are you tall and thin ? Do you have a curved spine, a pigeon chest, a weak chest? Are you constantly exhausted?

If you have some or all of these symptoms, the chairman of the South African Marfan Syndrome Organisation (Samso), Lorna Higgs, says you may be among the people with Marfan Syndrome.

Samso says Marfan Syndrome is an inherited disorder of the connective tissue. This disorder affects the heart, eyes, bones, spine, joints, lungs and skin.

These symptoms are only a fraction of the long list which also includes high narrow palate, weak joints, heart palpitations, collapsed lungs and stretch marks.

Higgs says people who suffer from Marfan Syndrome often look different from normal people.

"In cases where children have the disorder, they often get teased at school," she says.

Yet Samso believes that Marfan Syndrome also has its advantages. For example, a person with the disorder is tall enough to reach typically unreachable areas and see over the heads of others.

Also, sufferers have model-like attributes such as being tall and slender, without having to resort to dieting.

Cheryl Williams, writing in Samso's bi-monthly newsletter, Connections/Bindings,, says: "You have a choice about how to react to your circumstances. If you focus on what you can do, you will enjoy life."

On its website Samso states that it aims at connecting sufferers with one another for mutual support as well as ensuring that sufferers know about the advances in treatments of the disorder.

Sufferers can be males and females of every race and they can pass the disorder down to their children.

Higgs hopes to get in touch with as many people as possible who think they might have the disorder. She says that at times it takes a while for people to get properly diagnosed. She urges people to phone Samso's Pretoria centre or visit their website for more information.