Page 1 of 1

We need your help

Posted: Mon Jan 05, 2009 5:40 pm
by Mike Bartolatz
Kevin has asked me to write a booklet on iritis aimed at answering questions for our members. nothing is too trivial to ask and I'll do my best to research and post links to information to substantiate my replies. so please ask questions of me here.
it is feared that I am providing too much information and if that is the case, please accept my appologies as I don't want to scare our members off. I really do care about all of you no matter how serious your personal experience may be. upon initial diagnosis I recall the absolute fear of going blind and it was more than 25 years before I was able to go online and get answers to my myriad of questions. ( the doctors told me I would be Blind in less than a year if the corticosteroids didn't take effect quelling my uveitis). with a young family to support it became even more of an issue. over the past 10 years of my online support work I have met thousands of people whom I have tried to eductate to become their own best advocate for MODERN treatment of they uveitis and related condtions. occasionally members from years ago stop by to say hello or to say they have got another bout going on and ask where can they get the best care.

so, ask questions and know that you will be helping others. once again, nothing is too trivial to ask because when all the I's are dotted and the T's are Crossed we all learn and hopefully can rest assured that our questions are being answered and that we will in all likelihood not loose signficant vision IF we ensure that the doctors who are treating us are up to the challenge in finding out why we have uveitis. and if not, we know where to go to get the medical help to make sure we don't lose vision unnecessarily to uveitis.

wishing all of you the very best,
Most Sincerely,
Mike Bartolatz

Re: We need your help

Posted: Tue Feb 10, 2009 4:10 pm
by em_102
When I got diagnosed I started with questions like:
- What is Iritis?
- How do you get it?
- Is it contagious?
- What can I do to help my eye heal faster, if anything?
- Will I go blind or lose some of my vision?
- what are the common side effects of the treatment?

I was very fortunate that I'm being treated somewhere that has an Iritis expert so I was able to get answers to most of my questions but I also used this website to help me as well. I was VERY concerned about the lasting effects of this disease and if I would lose some or all of my vision.

Re: We need your help

Posted: Wed Mar 25, 2009 12:59 am
by meikog
I would like to find out if iritis is hereditary.

"Did your parents have any eye problems?"
That has been a question asked by many doctors I have seen. My mother was adopted and passed away from a car accident. I never knew my father. So my family medical history is a blank page really.

Re: We need your help

Posted: Wed Mar 25, 2009 9:10 am
by Mike Bartolatz
it rarely runs in families if that is your question. genetic factors can play a role in uveitis. the HLA B27 gene is often related to anterior uveitis/iritis.
other genes play a role as well in autoimmune disease related to uveitis. one can check for them if symptoms of an underlying autoimmune disease appear over time. these aren't checked for unless symptoms appear because of cost however. So, if a family member has Ankylosing spondylits or Crohn's disease for example, one could check of HLA B27, IL23R, ARTS1 and IL1RN to see if the person might come down with one of these diseases. there are other autoimmune disease processes related to these markers as well. additional diseases are HLA B51 and Behcet's disease, and HLA DR15 and DR2 in Multiple sclerosis.
not everyone with these conditions have these genes. there are antibodies in the blood too that can be checked for in relation to other autoimmune disease processes. If a virus, bacteria or other pathogen is suspect by way of possible exposure or apparent skin rashes, arthritis etc, then they can be looked into as well. with over 85 things directly linked to uveitis it would be VERY expensive to do tests for all of them unless something is suspect.

wish you the best,

Re: We need your help

Posted: Wed Mar 25, 2009 10:58 am
by meikog
Thank you Mike. I am HLA B27 Pos. What are the chances that I could pass this to my children?



Re: We need your help

Posted: Wed Mar 25, 2009 11:39 am
by Mike Bartolatz
the chance is low from what I have read. just be vigilant in getting a good exam of the kids if they have never been checked via a slit lamp exam. then if they complain of joint pain, have rashes or other complaints to get an evaluation by their pediatrician and if they start complaining of vision difficulty, floaters or develop redness of the conjunctiva that starts at the iris and extends toward the corners of the eye, to get them into an OPTHALMOLGIST for evaluation.
try not to get too worried about the what if's of life and to also try to avoid very stressful conditions.
if the kids go to the doctor and he/she calls red eye 'pink eye' ask for an opthalmological referral. often iritis is mistaken for conjunctivitis by pediatricians and GP's.

Wish you the best,

Re: We need your help

Posted: Sun Jun 21, 2009 4:22 pm
by clthetford
Im new to this site and have been reading for hours. Thank you for allowing me to join the group and hope to find some answers. My mother is 81 years, lives in a different state than I do so you can see why Im feeling so helpless here. A couple of weeks ago she was suffering from eye pain, sensetive to light and redness. She went to her optomologist and diagonsed her with either herpes or shingles of eye. Since she has inflammation he had her start a series of drops in each eye...omni pred. Instill 1 drop in each eye every hour. The first day she did this for approx 10 hours before going to bed. She woke on Saturday morning and she described her vision as fogged and scared her to death. She called the Dr and he told her to discontinue the drops and come see him on Monday morning. As the day went on her vision began to clear but was still having a hard time seeing close up. Since he was off on Monday she was seen by another Dr. The Dr examined the eyes and told her she did not have herpes or shingles to come back the next day and see her regular dr. The next day....he examines her and inflamation is down but still not normal and decides to order blood work on her. Since shes a retired oncology nurse she asked what type of tests and why was he ordering them. Instead of the dr just saying lets see what comes back he says I suspect lymphnoma.....OMG that puts her in a tailspin. Now the waiting game of the results. I told her to contact her regular dr and let him know what is going on. They said they too would stay on top of this. After a week of waiting everything comes back fine. Dr examines her one more time and says he has no idea what this is you need to either see a endocronoligts or rhumatoid Dr. I read up on both and can sorta see why but still not sure of the connection there. She now goes back to regular dr and he agrees on the rhumatoid dr. My question to you by seeing this dr is she on the right track or not? With all the stress she has gone thru in the last couple of weeks she not eating well and dropping the weight from the stress. I feel like she is totally shutting down from worrying. She has been thru alot in the last year and a half with losing her sister to cancer, my brother to a heart attack and just recently learning her brother has cancer.

I would appreciate your input on this and refer me to any sites that would help the both of us to understand.

Thank you
Carol Thetford

Re: We need your help

Posted: Sun Jun 21, 2009 11:25 pm
by Mike Bartolatz
Hello Carol and welcome to the group!
I would take my mom to see an Ocular Immunologist, a very highly specialized opthalmologist trained in the diagnosis and treatment of uveitis. iritis is inflammation o the anterior segment of the eye and is also known as anterior uveitis.
only a couple of types of cancer of the eye that mimick uveitis can be discerned by direct examination of the eye. often biopsy is required to rule this in or out. an ocular immunologist can sometimes tell by looking at the eye if it is herpes related either shingles or Herpes Sx in nature by the amount of cells clumping on the iris called synechiae. herpes related uveitis often causes the iris to no longer work by attacking the ciliary body.

where do you live so that I can suggest one of these rare specialists for a consultation?
the best is Dr Foster in Boston, professor of opthalmology at Harvard.

with over 85 things directly linked to uveitis the odds of figuring this out immediately are low.

Wish you the very best,