Posted at 7:01 PM
Another post from Gail, which she calls "Half Marf"
Both Gail's posts show how very difficult it is to get a clear diagnosis of some of these disorders.

Waving to Jeanette, and all on the Marfan-List!
Our son has symptoms of both Marfan Syndrome ( see National Marfan Foundation ), and Ehlers-Danlos Syndrome (see Ehlers-Danlos National Foundation ), but looks “marfanoid” being nearly 5’11’’ and only 9 stone. He has a narrow chest with a slightly depressed sternum (pectus excavatum). In common with many that have Marfan Syndrome, he has long limbs, hands, feet, fingers and toes.

The third picture shows the “Thumb sign,” considered by some to be an indication of the Marfan syndrome.

It has taken over two and a half years to get our son diagnosed as Marfanoid Ehlers-Danlos . One of the features both syndromes share is joint hypermobility. Our son has an overlap between the two disorders. Myself, and eldest daughter have been diagnosed with the Hypermobile type of Ehlers-Danlos Syndrome, and yet our granddaughter is said to be more marfanoid, showing the variability within just one family.

Not content with all this, our son also has syringomyelia (see The American Syringomyelia Alliance Projectwhich also helps people with Chiari 1 malformation, which is often the cause of syringomyelia ).

If anyone has Marfan Syndrome or Ehlers – Danlos Syndrome, and also Chiari 1 Malformation, with or without syringomyelia, I would like to hear from you

If you have Marfan Syndrome, or a Marfan – related disorder, I hope you do as I did, and join the Marfan–List (see Marfan-List). You will find a marvellous group of people always willing to help you, and your family,

With best wishes,
Gail