Occulo Facio Cardio Dental Syndrome: OFCD

Posted by Dwaines on 8/8/2011 at 1:11 PM

On the lookout for anyone out there who has been diagnosed with this rare syndrome. The symptoms include the following:
1.Bilateral Congenital Cataracts, Micro Corneas (occulo), 2.Elongated Face, Wide Nose Bridge, Club Toes, (facio),
3.Heart Murmur(cardio),
4.Malformed or Missing Baby Teeth, Malformed Permanent Teeth requiring extensive orthodontia, possible presence of 3rd set of teeth in later teens (dental).
Does NOT include mental retardation.ONLY present in GIRLS.

I am the parent and now grandparent of a child/grandchild with OFCD. Genticists have only just recently identified this syndrome. If your child (or you) have been identified as having OFCD, I'd like to hear from you.

There are currently 14 replies

Just to suggest something...Re:Occulo Facio Cardio Dental Syndrome: OFCD

Hello dear,
I do understand and feel your agony and your deep desire to find someone like you...! I know pretty well those feelings,as I was born with another rare craniofacial syndrome, called Hallerman-Streiff. Do you know how I found the first adult with the same condition as mine - who's now one of my best friends, though she lives in the States (I live in Europe)? I just had the idea one day, to type on Google Search "I have..." or "I was born with...." + the name of the syndrome, in quotation marks!! Try that, and see what may come up with..., you never know! I would also suggest you a FaceBook search; a lot of parents, families or maybe pateints might have already created a group. If not, why not creating one, on your own?? When I joined our group we were 24 members and now... 74 (well..., including friends and familiars, but yet.., a lot of adults turned up)!!!
I wish you the best of luck! P.S.: I didn't understand...., have you got both daughter and grand-daughter with this syndrome?
Sincerely,
Tatiana

Re:Occulo Facio Cardio Dental Syndrome: OFCD

Hi Dwaines - can you please contact me at OFCD24@gmail.com Thanks!

Re:Occulo Facio Cardio Dental Syndrome: OFCD

Yes, My daughter AND my granddaughter have OFCD. Thank you for your suggestions. I am in the process of starting a blog re: OFCD. In 24 hours it should be up. It is www.blindbabyblog.com

Re:Occulo Facio Cardio Dental Syndrome: OFCD

Hello there once again! Hope your family doing well with this condition, and especially your grandchild. You obviously haven't set it up yet...., I'll keep checking though. And if you're still thinking of how to create that blog, I'd suggest one more time a FaceBook page, as it is (much) "friendlier" with/for totally blind or those with non-useful vision screen-reader users.
Kind regards,
Tatiana

Re:Occulo Facio Cardio Dental Syndrome: OFCD

Dwaines not sure if you saw my message earlier but please email me, I have some questions for you about your daughter/grandchilds OFCD. Thank you!!

Re:Occulo Facio Cardio Dental Syndrome: OFCD

Hi Everyone, Thanks so much for your replies. The website is currently under construction and should be ready in the next few days.
In response to OFCD24. I did email you back at the gmail account? If you didn't get it, please try again? I'll be happy to answer any questions you have.

Re:Occulo Facio Cardio Dental Syndrome: OFCD

UPDATE:
OFCD-WHAT IS IT? A new section added to www.blindbabyblog for anyone out there who is interested.

Re:Occulo Facio Cardio Dental Syndrome: OFCD

I have a 10 year old daughter with OFCD and have been trying for years to locate others with the same syndrome. We are in the midst of extensive dental work and I'd like to touch base with anyone experiencing this part of OFCD or with anyone who has info. to share!!

Re: Occulo Facio Cardio Dental Syndrome: OFCD

To Amy! Please contact me through the website: blindbabyblog.com

Re: Occulo Facio Cardio Dental Syndrome: OFCD

To AMY: Please contact me at blind baby blog dot com

Re: Occulo Facio Cardio Dental Syndrome: OFCD

hi there.
i have a 7 year old daughter who i suspect has ofcd. i found out yesterday and im now looking into getting her tested. im 100% sure that she has this. she was born with every symptom. she is generally healthy and has had the appropriate surgery. i only learned of ofcd due to being concerned about her teeth. i googled all of the symptoms she had and this is how iv got to this stage. besides the main symptoms, there are other things that i feel are related. she suffers extremly bad in the sun, even with strong sun cream, her ears swell and often look purple, she is very nervous and has a nervous rash, she gets a type of blister on her gums thats reacurring, iv had an experiance where she has gone limp for a few seconds almost like she 'blacked out', and sometimes i feel that reactions and thoughts are slightly delayed. i know that this is all quite varied but i just want to find out as much information as possible to ensure she doesnt suffer and can gets all the support she needs. anyone that can help please feel free to email me, it would be appreciated greatley! :)
many thanks, mrs robinson, uk

Re: Occulo Facio Cardio Dental Syndrome: OFCD

Dear Mrs. Robinson,
Hi Mrs. Robinson,
I received your email, however, I didn't receive the part about rashes and "blacking out". This isn't part of OFCD. This sounds like your daughter is experiencing something unrelated to OFCD and needs to see her pediatrician for this condition. This could be a more serious condition and needs to be checked out as soon as possible. What you describe sounds like a type of seizure. Please let me know what your doctor says.
Thank you,
Dwaines Lawless

Re: Occulo Facio Cardio Dental Syndrome: OFCD

To amy and other ofcd parents, yes our daughter now thirteen yrs old is being tested for ofcd. Cngenital cataracts, cleft palate, heart murmer, club toe,awful looking malaligned fused disfigured teeth with huge long roots. Dental specialist appointmnet in ten days we live in new zealand and there are no known cases here, they want to break her jaw and remove all her teeth and give her dentures, the specialist dentists have no clue have never seen teeth like hers and please AMYyr ten yr old is getting dental work already what are they doing for yr daughter? So awfal living ina country they do not know what to do, please anyone with a dental soecialist who does not mind for me to get in touch with them please let me know. Ove any help advise or suggestions. By the way our daughter also has asbergers, large overbite and deep set eyes etc. Astrid from new zealand

Re: Occulo Facio Cardio Dental Syndrome: OFCD

hi everyone, just a quick update. since my last message, our daughter leah has had the tests done and we are awaiting the results. iv also set up a support group in the hope of finding more familys. its on facebook and its called OFCD awareness UK. so please feel free to post / message on there. the more info the better! many thanks, michelle.