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Disclaimer:
There are multiple contributors on this Cohen Syndrome web site that talk about medical topics. We comment about conditions, disability levels and presumed statistics. These comments also talk about how such a problem is usually solved, or how a particular concern can be treated. What is said in the comment sections, from personal perspective, may not be completely true, correct, precise or accurate.
Even if it is, it may not apply to your case. Be sure to consult with your own physician.
Welcome !
Wow! I can’t believe we have found you all! My name is Lisa Reynolds and my husband is Rick. We have been searching to an “answer” for all of my son’s various conditions for years..and one look at your webpage(and direction from a persistent pediatric opthamologist) have solved an 11 year old mystery. Our son Treyce, could be a twin of many of your posted pictures!!!! We are so thankful that you have shared your pics and stories. We are not alone!
Hi,
My name is Beth. My daughter is 13 and we are just learning all about this after not knowing for so long. It’s nice to see others that have the same story.
Hi,
My name is Wayne.My daughter Sophie who is 18 years old was diagnosed with Cohens over 15 years ago.She is the youngest of 3.Her 2 older brothers do not have Cohens.
For years I have been trying to find out if cohen syndrome can occur in the 3rd born with the 2 older siblings being normal.All the information I have read indicates that it is the first born,first and second born with cohens never have I come across 3rd born.
If anyone could assist I would love to hear from you and if there is anyway I can help please let me know.
Regards
Wayne
Hi,
I have two daughters, Debbie and Ashley, who have Cohens. I, like many others, ended up diagnosing them myself after 20 years of not knowing what they had.
To answer Wayne’s question, yes, there are third born children with Cohens. My daughter Debbie is a first born, then I gave birth to a healthy son, then my third child Ashley had Cohens. In a Cohens family, every pregnancy carries a 25% chance of having an affected child. I hope that answers your question.
Thanks to those who got this website up and running.
Sonja Davis
Well it is now official. After 13 1/2 years of the unknown. It is confirmed through the COH1 testing that my daughter Mikayla does have Cohen’s. I am now on a crusade as I always have been, now it has so much more meaning. I’ve spoke to some of you already and look forward to speaking with anyone who wants to talk. I can be reached at bethjamy@hotmail.com. I have another posting on here but couldn’t remember my sign on so I’ve started over.
It’s a whole new world for us!
Beth DeMarco
St. Pete Florida
Greetings from Montana! I just received a letter from the DDC Clinic about this website. We have an 18 yr old son who was finally diagnosed with Cohen’s about 3 yrs ago. What a long search it was! What finally triggered a diagnosis was his neutropenia, causing nasty mouth ulcers for years. Finally a pediatric hemotologist suggested Cohens after reviewing his lab records with the low white blood count since infancy. My son has been on Neupogen for over a year now and rarely has the ulcers, getting an injection every 3 days. We have 2 older sons who are not affected, we lost our third son shortly after birth, so its unknown if he had the gene, Derek is our fourth son and has all the typical symptoms of Cohens, developmental delays, vision impairment, hypotonia, short stature. He is about to graduate from high school, and so we are forming a plan for whats next.
UR Graham
Montana
Hi Family!
We live in Phoenix, AZ and have 2 children with Cohen’s – 17yr old daughter and 7 yr old son. They are our only biological children so we hit that 25% both times! We found the syndrome 6 mos after our son was born and started matching like conditions between he and my at the time undiagnosed daughter. That’s how we figured it out – and yes, a geneticist gave us a list of rare syndromes which “might” fit but we new instantly when we read their descriptions that Cohen’s was the one. I’m bad about communicating and we’ve always wanted to attend a conference but just haven’t. If anyone wants to speak with me PLEASE just email – I am an advocate from you know where for my kids and our veterinary medicine background gives us the medical understanding of all the aspects to their syndrome. Our son still does not speak so appears he may be one of the 20% that never get speech. That is new territory for us as our daughter speaks well. We are currently working with a communication device. Our hearts are with you all – we know the relief to finally know what you are dealing with!!
Clint and Amy Roth
amyrothdvm@hotmail.com
Hi from New Jersey. Our daughter Jill who is 45 was diagnosed with Cohen Syndrome when she was in her early twenties. We have been concerned because for the last year Jill has been demonstrating anxiety, agitation and even some aggressive behavior. This is totally uncharacteristic of her and we were wondering if this behavior was typical of older individuals with Cohen syndrome. Jill is probably one of the oldest cases. Any information or comments would be welcomed.
Bobbie and Steve Wenick
thewenicks@comcast.net
Hi from Indiana. My oldest daughter Kaylee is 14 and was diagnosed with Cohens (from a physical and mental exam) about 3 years ago. I am very excited to have so many people that I can talk to about this and share experiences with. Kaylee has some of the physical features, long hands and feet most of her weight is in her stomach some dental problems, large front teeth, she also wears glasses. Kaylee has been tested multiple times in school for Learning Disabilities. She is on the “low end of the IQ scale” I say shes just wired a little differently. She’s holding her own with C’s in most of her classes. She has alot of trouble with Math and has been diagnosed with a comprehension Disorder. She has had Bladder Spasms since she was little (we are still working with that) She was also born with a Cleft Pallette (soft pallette) has a healed Atrial Septal Defect. And lately (the last 4 years or so) has has some behavior issues, alot of anger management issues. Kaylee may be 14 but she is very immature and acts more like a 10 or 11 year old. So if anyone has any helpful hints or words of encouragement or needs to talk I am here and I listen very well.
Hi from Australia, My daughter Amy is 24 years old and was diagnosed in 1993 with Cohen Syndrome. I’m very interested in hearing about the visual problems associated with Cohens. Thanks, Linda.
Wow, so glad to have found this site and you all! We have two children, Tyler 11 and Allie 7. Last week our geneticist confirmed Cohens with the results of a DNA test. I have so many questions…
Both kids fit the overall scenerio, Allie is more severly delayed, barely verbal. I read someone’s comment on how 20% never end up with speech- I had not come across that yet, Does anyone know any more on that? We have her working with an aug comm device (a Dynavox M3), has been helping, especially for academics at school- she knows much more than she can express. We, I think, are on the mild end of low white count, but are very concerned about long term vision, anyone there? I did read one study in which a 60 year old was blind. We will be at the conference in July- hope to meet many of you! I can be reached at mkoenig1092@sbcglobal.net Thanks!
Hi, My name is Suze. My 7 year old daughter Arden was diagnosed with Cohen’s about 2-3 months ago, so I am still trying to see what all is involved with this syndrome. She was also diagnosed with PDD-NOS last summer…Anyone else on the spectrum as well?? I am also at a loss as to how to direct her schooling and wonder if others feel the same. Arden has been ‘globally developmentally delayed’ since 6 mos. has some mild CP, and has severe speech apraxia so she is virtually non verbal at least in a functional sense.
I am relieved to finally have a name for what has been going on with her, but am having difficulty with the lack of information I can find on Cohen’s.
Is anyone else from the Central Ohio area??
Also, my email is coachsuze@gmail.com
And, Does anyone have more information about the conference that was mentioned for July? Thanks!
Hi my name is Tammie, I have a 4 year daughter. I’ve been searching now since she was 2. I just happend to come across this Cohen Syndrome. This is the first time I’ve come close to figureing out what is wrong with my daughter. She has several disabiltis but noone seems to know why or where it’s coming from. She was born with congenital cararacts and she has microcephley, low musle tone and an extra digit on her foot. Posible mild CP, she just started walking about 2 months ago. She has global developmental delay. She has a Sensory prosessing disorder and she dose not sleep well at all, not without med. I’ve been thinking that maybe she has some kinda Autism, but she talks alot even though it’s not all understandable. We have been to so many doctors and no one can tell me what it is. It’s so fustrating when you know somthing is wrong but you can’t find out what it is. I know this as been long but I’m so hoping somebody out there can relate, maybe even know how I can get some more info about Cohen Syndrome. My email is meandjesus5@aol.com Thank ya’ll so much
Hi
my third fourth and fifth are girls and have Cohen Syndrome they are 30,26,and 24.
I’m Iva I live close to Middlefield,Ohio and My daughters go to DDC Clinc
and Dr. Wang they just moved into the new place .
To: Wayne ,I had 2 normal children girl then a boy …….Now married and have children of there own
They were not diagnosised till 2003.
all for now.
Iva
Hi, from Ontario, Canada. We are the parents of a wonderful 38 year old young man (only child) who was diagnosed with Cohen Syndrome about 4 years ago when we went back to the geneticist to have Derrick reassessed. He’d had a long standing low white blood count & he had recently been assessed as legally blind although there were days when he had some sight. He’d previously been diagnosed with Rubinstien Tabi Syndrome at age 2. The geneticist had just come back from England & had seen alot of children like Derrick. She immediately changed the diagnosis & put me in touch with a Cohen Syndrome group in England. We also learned about & attended the Cohen Syndrome conference in Ohio 2 years ago. Derrick is lovable, gentle, huggable and always wants to please. He went to a special school until age 21. He was always gentle until he lost his sight & then he became aggressive with other clients. He is now back to his loving self. If you can’t understand him, he’ll do a surraid until you understand. Mostly he’s very verbal & understandable. He is now learning braille. He had beautiful healthy teeth until about 6 – 8 years ago, when he developed gum disease . He underwent a deep cleaning & now he sees the Dentist every 3 months & his teeth are brushed twice daily. He now has beautiful healthy teeth again. Derrick has all the Cohen Syndrome characteristics & has been confirmed as having this syndrome. He’s developed the mouth sores in the past when under stress, but hasn’t had them for awhile.
All our years of worry & concern about Derrick’s future were unfounded as he is a great person & is so loving & caring. He will always need someone to care for him however.
If you want to communicate you can e-mail us at stanpete@rogers.com
Ciao a tutti sono Stella, ho una nipotina di 5 anni con questa sindrome di cohen scoperta da un paio di giorni…la bambina non si sa esprimere verbalmente ma comprende tutto anche di più… ha un movimento involontario delle gambe e delle braccia è iperattiva, qualcuno sa spiegarmi di più di questa sindrome? non è obesa..aspetto al più presto possibile notizie…grazie a tutti….una zia in pena…..
ci sono famiglie italiane che hanno questa situazione familiare?
Hi to everybody.
Ciao Stella, sono la mamma di Gaia, 8 anni.Abitiamo a Milano.Domani andiamo a fare il prelievo e spediranno i campioni a Siena per confermare la diagnosi di sindrome di Cohen.Ci aspettera’ un lungo anno di attesa!
Gaia non e’ obesa ma ha un bel pancino e gambe e braccia affusolate. Ha una moderata neutropenia, incisivi centrali prominenti, ipotonia muscolare con lassita legamentosa, ritardo mentale e una miopia ( per ora lieve ).
Ti lascio la mia mail, se ti va di scambiare due parole in piu’ b.beloni@gmail.com
A presto!!!
Beatrice
I am so happy to have found this site. My daughter, Kelly, was originally dx w/ autism. Many years later it was established that she has Cohen Syndrome. Kelly is at the low end of the IQ scale w/ no concept of time or money. She cannot regulate the shower water or tie her shoes but can recall any facts read about animals, birds, insects, etc…She displays many ocd traits, can be overwhelmingly sweet and then suddenly become angry. Pronounced inscisors, tapered fingers, hypermobility of joints, has had spinal surgery to correct severe kyphosis and pigeon chest, feet severely pronated. At 19, Kelly, is somewhat depressed. She has no friends outside of school. Would love to find someone for Kelly, like Kelly, to correspond with. Also, if anyone could offer information w/ regard to POA / Guardianship, I would appreciate it.
Catherine
Hi My name is Jan and my son is 33 years old and we just found out he has Cohen syn.
He does not have the big trunk or front teeth but has microcephally, dev. delays, retinitius pigmentosa, low tone, motor delays, etc.
He is the light of my life. He has a wonderful sense of humor a sweet innocense and loves everyone.
He was tested with a 57 IQ but can answer questions on Jeopardy and his fav game we play is when we say a sentence from any movie and he can finish the scene’s dialogue and name the movie.
We live in Oregon. I am a PT assistant and work with special ed for kids 0-5 years old. I don’t know anyone with Cohen’s.
My e-mail is jantastickpta@yahoo.com and would love to hear from anyone in Oregon.