Please login to post a response.

• duke university
• Posted: 2008-02-17 10:48:55 By terri h
• my son is 17 and has choroideremia. he had laser surgery 6 yrs ago to stop bleeding and now he is losing sight due to scar tissue creeping. the disease has not progressed other than night blindness. he goes to a local retina specialist and he has said there is nothing that can be done ( besides stem cells). i have been desparately looking for a dr who is familiar with the scar tissue forming after surgery and knows of any treatment for this. i am taking him to dr karl csaky in march at duke university, but it is an 8 hr drive. my question is, does anyone know of a dr that has treated scar tissue in the eye? and has anyone seen dr csaky?

• Re: duke university
• Posted: 2008-02-17 12:22:58 By Darran Z
• The problem may not be the scar tissue. But because the retina is already compromised with chorodermia, many will not touch a retina because it will indeed make it worse.
  
  Your son's best bet would be to adjust to this as it goes along. That may mean learning tools and skills to remain independant. There is alot of technology out there today that wasn't here 10 years ago to assist someone who is blind.
  
  Darran

• Re: duke university
• Posted: 2008-02-17 17:52:49 By Carol C
• You might want to read about Neurotech's CNTF implant study. I first knew about this about 1 year ago, reading about it in "The American" magazine. A man who was in the Phase I safety study had remarkable improvement in acuity ( from 20/120 to 20/50 after 6 months implanted), and found in the course of it that he did not have XLRP as he had always thought, but had choroideremia. He was 48 at the time of this study,and had been diagnosed in his 20's, and had progressed enough to frequently bump into people when in public. Yet he had dramatic improvement in vision, which remained stable one year after the implant was removed.My brother has X-linked cone-rod dystrophy, one of the XLRP's, yet different as his cone cells were effected first. He is in Phase II of this CNTF study, and having remarkable improvement in his visual acuity (per his subjective experience- they don't share testing results with subjects during the study period). He also appears to be having improvement in field as he has a larger area of night vision ( if that makes sense). Now, not everyone is having this experience. It makes sense to me that since all of these degenerations are caused by different genes, response to treatment could be very different. Perhaps others will have improvement after a longer time of treatment ( my brother has had this implant for almost 5 months). Some with choroideremia were to be included in this Phase. This will be very interesting to watch play out, especially due to the aforementioned experiences of that 48 year old man. Some who have dealt with these issues all their lives will very understandably caution you to be careful of hope, as so much hope in the past has come to nothing.But, hey, I'm new to this, and not afraid to hope! Carol C.

• Re: Re: duke university
• Posted: 2008-02-17 18:05:53 By terri h
• i to am not afraid to hope. any info towards a treatment i am willing to listen to. i am not that fimiliar with the implants. could you give me more info on who to contact. thank you so much for your response.

• Re: Re: Re: duke university
• Posted: 2008-02-17 18:15:52 By Carol C
• If you search for "ciliary neurotrophic factor, retina", you will get a lot of interesting reading on the Internet, in which you can find the experiences of the man with choroideremia. My brother has another check-up in March, and I will post his experiences regularly. Carol

• Re: Re: Re: Re: duke university
• Posted: 2008-02-17 18:21:50 By terri h
• thank you, i would like to know how your brother does.

• Re: duke university
• Posted: 2008-02-18 09:15:25 By carolina s
• Carol and Terri
  I just had my 6 m app after the CNTF implant and I will tell you that they WILL share the results with you, but you need to ask first. As far as my update there has been a mild improvement in acuity but not in the visual field.
  carolina

• Re: Re: duke university
• Posted: 2008-02-18 11:30:32 By Carol C
• Well, they wouldn't tell my brother, even when he asked. Could be different facilities/testors have different standards. Carol

• Re: Re: duke university
• Posted: 2008-02-18 22:32:33 By Darran Z
• I agree with Carol. The fact that your facility is the only known place that is sharing information (which they are not suppose to do) then you must be lucky. Clinical trials are not suppose to share the information. Part of it is an FDA requirement. So technically, your site could be breaking a few rules.
  
  Darran