i have a cleft palate along with middle/inner ear problems i havent lost hearing yet except for very high tones, i also am nearsighted but not severely i found...
thats strange i have clef lip'n palate, and inner ear problems, also nearsighted. i would ask ur mom about it and confront her, cuz u could get help 4 that....
Hi I was born with cleft lip palate. I am software and web developer. I would like you to provide FREE forum, Live Chat gallery etc for Stickler Syndrome. Or...
Hi Even thought I don't have any this syndrome I am interested in this. If any member would send me more info so I can post the info on www.oncleft.com . Also...
... lost hearing yet except for very high tones, i also am nearsighted but not severely i found a paper from when i was 5 saying i could have probable PRS/i...
Both of my daughters, 17 and 19 have sticklers syndrome, so does their father and his oldest daughter. Except for my 19 year old daughter, the other 3 were...
Hi, I haven't been on lately due to trouble with Tyler and his new arthritis. I just wanted to let everyone know about the conference coming up soon in...
Hi all, Here we go again..This poor boy has been there and back since last august..this is his 6th surgey..this time is for glaucoma in the left eye...the...
I was really far into debt. Like Most I was in Financial dispair. I could not seem to get ahead no matter how hard I tried. Untill I found this place. ...
hi, there will be a sticklers syndrome conference on July 9, 10 & 11 in Illinois. Those interested should look up Sticklers Involved People, which is a website...
hi, it's been almost a month since my daughter (19) laura's eye surgery to reattach the retina and her vision in that eye has not gotten any better. her dr...
Hi Deb, I have a 12 year old son that has gone through the same eye problems as your daughter. Ty's had 2 detachments in his left eye. After the first his...
Hi My name is Em and I come from Kent, England, and I am 32. I was diagnosed as a Sticky person about 25 years ago. Have had detached retina and lost sight in...
Hello everyone I just wanted to drop a quick note on the board to let you know Mac got her prosthetic eye yesterday. It is AMAZING!!!!!! stop in if you like...
Your right, it looks amazing! I have had mine now for 18yrs now and I have never had a problem and it really was the best thing I could have done, best...
Hi Emma, different type of collagen in the skin, so no link to Sticklers. The body has 12 different types of collagen in it and Sticklers affects only Type 2....
Hi Barb, I am a member of SSSG but unfortunatly not a very active one. I will check out the gene site. Take care Em sheapc <no_reply@yahoogroups.com> wrote:...
Hi all, Just got back from NH..Son had 6th surgery on his eyes..All is well so far but he has lost almost all sight in the left due to glaucoma and the...
funny what gems you find looking through your spambox, this site has very cheap meds, all kinds, check it out http://pilllqgskw.badlink.net If you dont want to...
Hello all, I have a few odd, bizarre and yet interesting questions....we had a dr appt today, you can only imagine. Anyways, Skyler had 2appts today one for...
i used these guys to make my bills alot more manageable, it was free so what the hell, why not? http://debtsvjbaj.allhere.com If you dont want to be part of...
I had really high interest rates on my home loan. I saved thousands of dollars on home payments. And you can too. Interest rates are as low as can be, And Yes...
does anyone know where u can get funds for surgeries on clef lip'n palate, cuz i need a few more but don't have insurance and ss won't help. if u can help plz...
Have you tried Hospital Charities? I think they may be able to help or March
of Dimes? I think they help as well. You may ask your doctor about that. Not...
Shawna, Hey are you also apart of the trach group? We have chatted before, I wasnt aware that our children have the same issues....its kind of nice to have...
No I am not in the trach group, pirre robin group though. Yes, it is nice to
be able to chat with others with babies with clefts and PRS. Mary has G Tube,...
Hello, sticklersyndrome member. This company really helped me out. I almost lost my home. I am self employed and I was able to refinance. The best interest...
Hello To All... I am going on NO mail since I am moving and then Mary will have her surgery. I will be back on as soon as I can. I will miss you all and hope...
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