i too have retinitus pigmentosa

This discussion is related to Retinitus Pigmentosa..


i was diagnosed in the 4th grade with retinitus pigmentosa, by eye specialists in ny. i am now 47 years old, my retinas stopped deteriorating for a while (or very slowly), but have started again even faster than normal. my perifial vision has decreased emensely, and i can not drive at night anymore.  unfortunately i dont think there really is any type of surgery that will ensure our vision to be "normal".   if there is such surgery, van u please inform me as to what it is.
thanks :^)

[John C Hagan III, MD, FACS, FAAO]

There is no surgery that will help RP in itself. Many RP patients develop cataracts and they removing them often helps. You should be under the care of an ophthalmologist and have a yearly exam. You should also be evaluated for legal visual disability with appropriate soc sec benefits, income tax exemption, etc.

Most RP patients your age SHOULD NOT DRIVE.

Be sure you are registered with the National Retinitis Pegmentosa Foundation (Baltimore MD).

JCH III  MD

[betsy973]

ty for that information.  i never knew of the national retinitus pigmentosa foundation, and will do that immediately.  i also never knew that i could get ssi benefits from this.  this information will help me immensely.  

[John C Hagan III, MD, FACS, FAAO]

Soc Security, Medicare, income tax deductions will depend on whether you are "legally" blind or not. SS will normally pay to have that determination made. In general your widest diameter of vision in your best eye must be less than 10 degrees.

This is a link to a web page giving informations on organizations that do RP research, support, etc.

http://www.kumc.edu/gec/support/retiniti.html

JCH III MD

[betsy973]

thank you again for this new information. i shall check into it. i have also scheduled my yearly appointment with my eye dr.  is there any questions i should ask him in regards to this?    thanks again

[John C Hagan III, MD, FACS, FAAO]

Be sure your eye doctor is an Eye MD ophthalmologist. If not find one at www.aao.org  Schedule a visual field exam (peripheral vision test) for the same time that you have your eye exam. Ask the Eye MD about whether you are "legally" blind for disability purposes.

Most states have an agency that deals with visual disability or an organization like "Bureau of the Blind" that can also be helpful

JCH III MD

[betsy973]

my eye dr is a retinitus pigmentosa specialist. when i have my eye evams he always tests  my peripheral vision. i will ask him if i am legally blind.  thanks again, what a great informational site this is :-D

[John C Hagan III, MD, FACS, FAAO]

Your welcome
JCH II MD

[betsy973]

just wanted to update u that i have a retinal specialist appointment on the 27 of this month.  thanks again

[pkumar]

Recently i came to know that there is a cure for this. Microsystem Acupuncture is one which stops the detoriation rate. Do anyone hear the same? Will this work fine. Will this do something. Please let me the adv.s and dis. by this treatement.

[John C Hagan III, MD, FACS, FAAO]

TO PKUMAR

There is no cure as yet for RP.  For all diseases for which there is no cure many quack-false treatments exist which steal the patients money and treaten his/her health. You have stumbled across one of these. Accupunture will ONLY SEPARATE YOU FROM YOUR MONEY.

JCH MD