Guest guest Posted July 24, 2001 Report Share Posted July 24, 2001 Ellen, It's great to see you post... I'm so sorry that you and your sister both have RP. My youngest daugher 20 is having symptoms of RP just in the last week and I'm so worried... I have 3 daughters, 20, 23, 26 years old and a 4 yr old grandaughter. I live in Calif and have been dx with RP for 3 years. I love gardening, but can't do what I use to do..LOL I think that is just old age...LOL Welcome to the best family around... Keep us posted as to how you and your sister are doing... How long have you two had RP.? I wasn't getting any mail for awhile so I must have missed a few of your posts.... think everything is okay now... Hope you have a good day.... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Dear , Thankyou for your post. I've had RP since 1885, or thats when I started showing symptoms of RP. Before that they told me I had Lupus when I was 19 yrs. old. This dx bounced around for a few years till it was decided that I didn't have lupus. Then the docs just said that I had an auto-immune disease of unknown origin. This " unknown " period overlapped the time I was showing signs of RP. RP was even mentioned several times but never seriously considered. I had a biopsy of my ear about 6 yrs ago when I received a definite dx. Unfortunately alot of destruction has taken place because of the long period of time it took to get a dx. I put my trust in God and take life day by day and try to do the best I can. take care, Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 Dear Ellen, do you remember what your pathology report said when you had your ear biopsied? I also had my ear biopsied and it said "Chondrodermatitis nodularis helicis." Just curious....Best Wishes, Sue Marth Quote Link to comment Share on other sites More sharing options...
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