Friday, November 07, 2008

Cogan's Syndrome

There are many reasons a person can lose their hearing. Some people lose it gradually and some loss is sudden. My inbox is littered with people that go from one extreme to the other - perfect hearing to sudden deafness. Many personal tales have words like Autoimmune Inner Ear Disease, Meniere's disease and Meningitis are duplicated several times over.

I've seen the symptoms sprinkled across my screen so much that they almost seem to run together.


Well, I learned about a new one at ALDA. I was reading the CART screen captioning the voice of a woman that identified herself as a Coganite.

Coganite, Coganite, Coganite

What the hell is a Coganite? A Coganite is a person that has suffered from Cogan's Syndrome. It is a rare, extremely rare autoimmune disorder can cause deafness and blindness. I believe I overheard the woman say that there has only been about 150 cases in the United States. So yeah, I would say that rare alright.

The symptoms of Cogan's Syndrome are:

  • Rapid onset of hearing loss in one or both ears
  • Vertigo
  • Nausea
  • No balance or severe gait
  • Tinnitus
  • Nonsyphilitic Interstitial Keratitis (inflammation of the eye),
  • Sensitivity to light
  • Vasculitis (inflammation of the blood vessels)
  • Arteritis (inflammation of the walls of arteries)

It seems to occur in young people from the age 22-29 years old. It has been known to occur in some older people but it is more common with the younger crowd. No one knows what causes Cogan's Syndrome. The good news is that there is a treatment for Cogan's which is cortisone type medications such as everyone favorite mood changing steroid -- Prednisone. The bad news, if it is not diagnosed quickly, a person usually suffers from a complete hearing loss and partial vision loss.

The good news is that no one has to deal with this alone. You can contact the Cogan's Contact Network if you or a family member has been recently diagnosed and you want to connect with others that have been down this road.

For the rest of us, we can inform our doctors of this extremely rare condition to raise awareness because an affected person hearing and sight can be saved and it is only a matter of time that it can.


Sam said...

I've never hear of it but it is really interesting. Hopefully, someday they will find the gene and cure it.

Unknown said...

I warned people for years about losing their hearing. I am almost 50 and I noticed some are losing their hearing already.

I felt like Noah, people don't listen. :)

Valerie said...

Wow, I have never heard of it either. Thank you for educating us. As someone who is trying to find the real cause of my hearing loss, it is so important to just be able to put the name to it.

I hope others wake up and listen to Jim and you.

Anonymous said...

Wow that set me back at age 26 when one time i lost my hearing completely on the left ear when i can normally hear the phone ringing with hearing aid out of the blue i was told the phone is ringing thats when it hit me. Had hearing test .. they told me you are profoundly deaf i was completely shattered until 2 years later i suffer vertigo and still have it for over 10 years until recently i take SERC medication and it helps a bit but not 100 percent.

Since you mention Cogan's syndrome i will bring that up to the doctor next time i visit.

thanks Abbie :)

Diane J Standiford said...

Dang! Thanks for the info.

Anonymous said...

Thanks for writing about this. I have never heard of it.

deafcone said...


Had my 2nd implant done monday. Came home tuesday. No nausea this time. Used a patch. Last time I was sick as a dog. More pain this time around. But it's done and now it's onto the 6 month calibration plan!


Anonymous said...

Abbie - thank u for such an informative article. I never heard of this syndrome before, and shows how ignorant one can be!

Unknown said...

Hi Abbie, I read your blog on Cogan's Syndrome with great interest. I was diagnosed with CS in 2006 and along with 34 other CS patients belong to a Facebook group called
Cogan's Syndrome-Coganites there is also a FB group called Cogan's Syndrome that is for patients, friends and families. As it is such a very rare disease it's wonderful to meet with others who understand this very strange and befuddling condition. Thanks for enlightening others on the subject. Kathi Jo