Hemifacial microsomia

Editorial Team / Admin · Mar 15, 2004

http://www.worldcf.org/fc_1.html

website above of World Craniofacial something-something . . . had pix and etc. It was the only site I noted, of the many that popped up while in search mode. -- D

zacarias, ASN, RN · Mar 16, 2004

Does anyone have any information about this syndrome? Has anyone cared for a patient with this problem? :uhoh21:

Beaner

I'm a 25 y/o nurse and I have hemifacial microsomia. Do you or a family member have it? Feel free to ask me anything. BTW, my condition was a deformed left ear at birth with hypoplastic (small) jaw.

Beaner · Mar 16, 2004

Beaner
I'm a 25 y/o nurse and I have hemifacial microsomia. Do you or a family member have it? Feel free to ask me anything. BTW, my condition was a deformed left ear at birth with hypoplastic (small) jaw.

Zacarias, thanks for responding. Yes, I do have hemifacial microsomia and had multiply reconstructive surgeries as a teenager. Actually, I was one of the first patients ever to have surgery to help correct the anomoly. I am the only one in my family with this syndrome and none of my 3 children have it. My reason for inquiring is that I have never come across another patient in my years of nursing with this syndrome. And I am a pediatric nurse so I would think I would have seen another case. I am curious to see what kind of surgeries are being done now-a-days. By your description we have about the same amt. of involvement, mine is on my left side too. Also, my left eye is smaller than the right and I had a dermoid cyst in the left eye and decreased vision in that eye. Have you had reconstructive surgery?

ketherine6666 · Dec 2, 2004

Hi There,

My son is now only 3 months old. And I found that he has Hemifacial Microsomia. I went to the internet and found that there are some conflicted articles about this disorder. Some say that it is not progressive, not genetic. Some say that it is genetic, and it is progressive. I have no idea who is right. I am desperate. Everytime I look at the little angel's face, my heart hurts so much. I can not imagine what he will go through in his life.

If you have any information, please let me know. Please.

a desperate mom

My email address is [email protected]

Thanks!

Zacarias, thanks for responding. Yes, I do have hemifacial microsomia and had multiply reconstructive surgeries as a teenager. Actually, I was one of the first patients ever to have surgery to help correct the anomoly. I am the only one in my family with this syndrome and none of my 3 children have it. My reason for inquiring is that I have never come across another patient in my years of nursing with this syndrome. And I am a pediatric nurse so I would think I would have seen another case. I am curious to see what kind of surgeries are being done now-a-days. By your description we have about the same amt. of involvement, mine is on my left side too. Also, my left eye is smaller than the right and I had a dermoid cyst in the left eye and decreased vision in that eye. Have you had reconstructive surgery?