MEMORANDUM
TO: Men all over the planet
FROM: A very rare person (Literally!)
RE: Facts on my disability
DATE: July 29, 2009
Because I know some men (and women, too) deal better with cold, hard facts, I thought I’d provide some information on my physical disability, Freeman-Sheldon Syndrome. We’re small in numbers, but we’re a powerful bunch, a force to be reckoned with.
Check out these facts to broaden your knowledge:
Ernest Freeman and Joseph Sheldon, two British physicians, first described this distinct disorder in 1938. The syndrome is characterized by skeletal malformations in the hands and feet and facial abnormalities. Freeman-Sheldon Syndrome (also known as “Whistling Face Syndrome”) is a rare genetic condition which characteristically includes a small “whistling” mouth, a flat mask-like face, club feet, joint contractures usually involving the fingers and hands, and under-development of the cartilage of the nose. Intelligence is usually normal. Most of the features of this syndrome are due to muscle weakness.
Usually, FSS follows an autosomal dominant inheritance pattern. With this pattern of inheritance, the syndrome appears when a child inherits one defective gene from one parent. In some families, FSS follows an autosomal recessive inheritance pattern. In these cases, the condition only appears when a child receives the same defective gene from each parent. This syndrome can also occur sporadically, that is, neither parent passes on the gene responsible for FSS.
As of 2001, the gene responsible for FSS has not been located. Current genetic research is focusing on chromosome 11. Some experts consider FSS a form of distal arthrogryposis, which has been mapped to chromosome 11.
Freeman-Sheldon Syndrome is most recognizable by its facial features. The hallmark of the syndrome is the small mouth.
There are less than 100 reported cases.
Life expectancy for infants diagnosed with Freeman-Sheldon syndrome is normal.
See, we don’t have the plague. It’s not that hideous. Really. So next time you see me, GUYS, don’t feel like you have to run furiously in the other direction. Or, hey, why not ask me about it? I’d love to talk to you….
xoxo,
P.S. I’ve also had my case featured in countless medical journals. Now tell me you don’t find that hot!!!
[Photo via ffffound]
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LouDuk says
This is absolutely perfect for people like me. I was wondering about it, yet I would have felt terrible had I come right out and asked.
**Seyma** says
great to know more about you Melissa… don't feel yrself alone or something cause i wouldn't run away from you like that… as i said before i'd love to meet you and talk to you much more cause a person having yr intelligence is a treasure for me. i really love and value yr ideas…
love and love…
Lauren says
As I asked in my previous comment …
Have you ever considered looking for men with a disability? Perhaps joining an online forum and posting in the personals, or joining a "real life" support group for people with disabilities could help you meet men who share something in common with you, and who would definitely be able to "look past" the disability.
Cherice says
Thanks Melissa for sharing more information on the disability.
You seem to have such a beautiful soul and I think anyone should be grateful to have you as a friend and even more as girlfriend.
Just out of curiosity, can someone with this disease get plastic surgery?
Mel-Rox says
I read all about your disability yesterday. Very interesting.
Texas says
I have been reading your blog for only a short time, but I find myself returning regularly. I enjoy your writing and your openess.
None of us are perfect. We all have "issues" even if there is no physical disability.
There is supposed to be someone for everyone. Hopefully your Mr. Right will come along soon.
Spot says
Hi Melissa. I am a recent addict to your blog. I love your openess and honesty and "heart on sleeve style". My oldest son has severe autism. While physically he is perfect, mentally he's locked in his own world. I don't even know if he ever thinks or realizes that he's different from anyone else. I hope not. I think that would be very hard and I think that you deal with it admirably.
As for seeing past the disabillity to the person inside…I can assure you that there are some men out there. I know, because I raised one of them. Having grown up with their brother, my other son and daughter have both mingled with people of all ages and differing diagnoses and abilities. My youngest son had a friend who was a girl with muscular dystrophy that he'd known since preschool. He never once treated her differently then any of his other friends. She passed away two years ago at the age of 14 and he was devastated.
Both my youngest son and daughter work at a summer camp for people with disabilities. And the other counselors there are the same. Everyone is treated with the respect and dignity they deserve. And they have developed friendships with many of the campers as have my husband and I. So keep your chin up. There are guys like that out there…and one is waiting for you.
♥Spot
monica says
Each post of yours is bringing you closer and closer to your readers.You are enchanting us with your words, love and amazing confidence.Not many people talk about their disability like that and hats off to you.
I am dying to meet the woman behind this blog.
Love 🙂
Lisa says
Melissa–
I sent you an email!
Thanks for this post, it was really informative. I just started reading your blog, but I like to check it out daily. I knew you had a disability (because you mentioned your freelance column), but I didn't know exactly what it was. Of course, I relate to wanting to find someone to accept you for who you are. I was the same before I met my boyfriend, and then he came along. He doesn't like my burping, but other than that, he likes the things about me I was most self-conscious about, and that has really changed my perspective of life. We all have our own unique traits and flaws which make us "us".
Princess Abigail says
Thanks, that was interesting. I'm always interested to read about chromosome 11 – my little girl Abigail has a deletion of the long arm of hers. and she's gorgeous too! I'm glad I stumbled across your blog – I intend to continue reading!