Friday, February 3, 2012

eye update 2/1/2012


January 22, 2008 is when this uveitis journey began. Four years later it is still an unwavering worry. Uveitis is a disease that affects only about 11,500 children in the United States. Even though it is extremely rare, it is the third leading cause of blindness in the developed world. Children with this are at risk for blindness and complications from glaucoma and cataracts. In simple terms, uveitis is inflammation inside the eye. Left untreated it can damage vision rapidly. When Jacob was diagnosed with uveitis four years ago it was a complete shock. I had heard that because he has juvenile arthritis that he would be at risk. The uveitis was diagnosed four years after the diagnosis of juvenile arthritis was made. This been said, it is extremely important for children to be followed very closely, even years after the arthritis diagnosis. Uveitis can pop up very quickly and silently. Jacob had NO SYMPTOMS.
Since the diagnosis of uveitis we have been going to see Dr. Foster who is in Cambridge. If you are unfamiliar with Dr. Foster you can read up on him at www.uveitis.org . This site has a wealth of information. Jacob's eyes have remained clear of inflammation since about June of 2008. His uveitis has been controlled with Humira. Just this week we went for the visit and all continues to be well. Jacob's eyes are free of cells. He has not escaped this disease without damage though. He has small cataracts that formed as a result of the uveitis and steroid drops that were used to treat the inflammation. Jacob fortunately used the drops for a few short months. We are extremely lucky that he was treated aggressively and his vision has been preserved. He has started to notice that glare is a problem for him. He says that when he looks at lights he sees a jagged halo around them. This is caused from the cataracts. The cataracts are mild, in a sense, and do not need to be removed at this point. At this appointment I was curious to see when we could let our guard down considering he has been doing so well. Dr. Foster said that 7 years free of inflammation (which will be in 3 more years!) and we will talk about moving his appointments further apart. So for now we continue every 3-4 months in Cambridge.

2 comments:

Dana Morningstar said...

Hi, I volunteer with IAAM (International Autoimmune Arthritis Movement~formerly the Buckle-Me-Up Movement!). What we've been working on in February and March has been reaching out to people on our JA blogger list and asking if we can post them as a resource on the JA page. To start, could we have contact info from you to add to our blogger list for our records. And if you give us the info, then we will also post your blog as a resource for others on the JA page. Please email me at danalm_iaam@yahoo.com and let me know.
We also invite you to participate in World Autoimmune Arthritis Day on May 20th 2012!

World Autoimmune Arthritis Day
events.r20.constantcontact.com

Join us for a 47 hour, Global Online Virtual Convention aimed to bring global awareness while learning more about your disease and ways to manage it best!

Thanks, Dana M

3232 said...

Hello,

My daugther has been diagnosed w/ JIA-associated uveitis about 6 months ago, only impacting her eyes. She is also on MTX and potentially going to start Humara. This is one of the first blogs that mention a 2 week long cough. She has been coughing before the MTX, but it comes and goes. Initially, it had been very bad, but now it only lasts for a few days before going away. Who do you see in MA?