Tuesday, September 30, 2008

September is Declared Ocular Inflammatory Disease Month in Massachusetts

We are very privileged to be treated by Dr. Foster

We will be seeing him tomorrow morning!



Currently there are over 280,000 diagnosed cases of Ocular Inflammatory Disease in the United States. However, many people remain unaware of the serious nature and indications of this complex illness and avoid seeking treatment. It is my hope that by declaring September as Ocular Inflammatory Disease Awareness month the rate of unnecessary blindness will be mitigated and early intervention enhanced. – Jennifer Callahan, State Representative

Boston, MA- Governor Deval Patrick has proclaimed September 2008 as OCULAR INFLAMMATORY DISEASE AWARENESS MONTH in the Commonwealth of Massachusetts. Destructive inflammatory diseases of the eye such as uveitis are the third leading cause of preventable blindness in developed Countries. Untreated or under-treated uveitis, or repeated episodes of inflammation within the eye, can lead to scarring and blinding consequences. Symptoms of uveitis include redness and irritation of the eye, blurred vision, eye pain, light sensitivity and floating spots. State Representative Jennifer Callahan, D-Sutton, will present a Resolution from the Massachusetts House of Representatives in recognition of the awareness month to C. Stephen Foster, MD, Clinical Professor of Ophthalmology at Harvard Medical School, world renowned ocular immunologist and president and founder of the Ocular Immunology and Uveitis Foundation(OIUF) during a ribbon cutting ceremony during the Foundation’s annual “Walk for Vision” on September 27th at noon in front of the Royal Sonesta Hotel. Proceeds from the event will benefit the Ocular Immunology and Uveitis Foundation’s groundbreaking research efforts in ocular inflammatory disease and ocular immunology. The 5K walk along the Charles River in Cambridge will conclude with a lunch at the Royal Sonesta and a meeting of the OIUF support group featuring Dr. Foster as the keynote speaker, who has taken a leadership role in informing the public about ocular inflammatory disease. He states, “Ocular immunology is not a particularly glamorous field, and few ophthalmologists choose to enter it. As a result, few ocular immunologists exist, and so many patients with uveitis and other forms of eye inflammation continue to be treated with 1950’s standard of care while much more effective and safer strategies exist today. The result is that far more people are eventually blinded by eye inflammation than should occur.”
The mission of OIUF is to find cures for ocular inflammatory diseases, to erase the worldwide deficit of properly trained ocular immunologists, and to provide education and emotional support for those patients afflicted with ocular inflammatory disease. Other upcoming events hosted by OIUF include two physician education conferences in October. The “International Symposium on Birdshot Choroidopathy” an autoimmune disorder, will take place on October 4th. The Third Annual Physician Education Conference: “New Paradigms in the Treatment of Anterior Segment Disease” will take place on October 25th. Both conferences have been approved for Continued Medical Education requirements for physicians.

More about C. Stephen Foster, MD and The Ocular Immunolgy and Uveitis Foundation

In 2005 C. Stephen Foster, MD, Clinical Professor of Ophthalmology at Harvard Medical School, founded MERSI (Massachusetts Eye Research and Surgery Institution), a state-of-the-art facility dedicated to research, education, surgery, and treatment of inflammatory diseases of the eye after 30 years at The Massachusetts Eye and Ear Infirmary where he created the Immunology and Uveitis Service and began the Uveitis and Ocular Immunology Fellowship. Dr. Foster continues to be devoted to the care of his patients, teach fellows and direct a research laboratory in his new private institution, where he has formed a research and education Foundation, the Ocular Immunology and Uveitis Foundation.

Foster is a leader in his field and is widely regarded by his colleagues and patients as having revolutionized the care of adults and children with ocular inflammatory disease. Through research studying diseases outside the field of ocular medicine, Foster has developed new treatments that are dramatically more effective than the traditional treatment of steroid drops. Foster estimates the new treatment, a type of chemotherapy, raises the number of patients whose blindness
is reversed or prevented to around 80 percent, compared with the previous rate of almost zero.

Dr. Foster has authored over 600 publications, sees and treats patients from all over the world with cataracts, glaucoma, cornea and external ocular diseases, and uveitis. He teaches cataract, corneal microsurgery and vitreal surgery for inflammatory eye disease. Among the many important awards honoring Dr. Foster for his pioneering work are the following: the American Academy of Ophthalmology Award (1983), the Hippocrates Medal, Swedish Royal Academy of Medicine (1985), the American Academy of Ophthalmology Senior Honor Award (1993), the Research to Prevent Blindness Senior Scientific Investigator Award (1995), the Diaz Caneja Medal (2003), the International Ocular Inflammation Society Award (2003), the Mildred Weisenfeld Award for Excellence in Ophthalmology (2005) and the American Academy of Ophthalmology’s Lifetime Achievement Award (2007).
The Ocular Immunology and Uveitis Foundation’s exclusive education program educates patients, their family members and friends, and the medical community about ocular inflammatory disease through educational conferences, literature and outreach. This support is offered on a worldwide level. OIUF maintains the most complete ocular inflammatory disease web resource which offers all patients and medical personnel a vast amount of information that is easily accessible and available on its website.

For more information about Dr. Foster and the Ocular immunology and Uveitis Foundation please visit www.uveitis.org

Monday, September 29, 2008

Arthritis Bill update

The Arthritis bill has passed through the House of Representatives. It is on to the Senate. If the bill gets passed through the Senate it is on the way to the president to be signed. Keep your fingers crossed. This bill is so very important to everyone with arthritis, especially the children. The shortage of pediatric rheumatologists is increasing. There are under 300 of them in the entire US. The bill will encourage more physicians to move into the specialty. There are currently 5000 or so children in Massachusetts alone, who have arthrititis. There are only a handful of doctors to treat them.

Sunday, September 21, 2008

Boston Arthritis Walk pictures

Team pictures

Jacob and Dr. Lopez

Saturday, September 20, 2008

Walk is tomorrow!

The walk is tomorrow. I Just finished making the shirts for the walk. I am praying that the paint dries in time! We will be leaving for Boston in the morning!

Thursday, September 18, 2008

For all who were waiting I had to reschedule Jacob's eye appointment he had for yesterday. I was not feeling well. Long story.. I am very upset we didn't get to go for the appointment. I had rescheduled it until next week. But just realized I can't make it next wednesday either! So I am going to call tomorrow and make it in two weeks. This will bring us out 10 weeks for the appointment. Not a good thing!

Update on the walk... The walk is this Sunday! We are ready to go. Pray for Sunny weather!!
Anyone still wishing to support Jacob in the walk can donate by a clicking on the link to the right.
All of the money goes to the Arthritis Foundation to help fund a cure for this awful, debilitating disease.

Thank you to all who have supported our efforts!! Stay tuned for pictures from the walk!

Sunday, September 14, 2008

Soccer yesterday was much better. Jacob was kept on defense and there wasn't as much intense running. At times, he was still limping a bit or skipping. The skipping he does reminds me of how he handled the pain when he was first diagnosed. If you remember that was the first sign we had when he was 5 and started this disease. This morning he woke up not doing to badly. Last week the day after the game he was extremely stiff and sore in the morning. I think he will be okay playing as long as he isn't pushed too far and is allowed to rest frequently. He had a great time playing yesterday! His team also won the game!

On Wednesday this week, is Jacob's appointment with Dr. Foster. We are about 7 or 8 shots into the Humira. I am worried for some reason about the appointment. I read a lot on the support boards on http://www.uveitis.org/. I read all the posts that other parents write about their child's fight with the disease. It just seems like every child has ups and downs with the disease. You never read much about the child's eyes staying clear once and for all. It seems like such a rollercoaster ride. I keep trying to stay positive but each appointment my fear of Dr. Foster seeing cells in his eyes is very real. Each time we get a clear bill of health, it is peace for another 8 weeks. Then it starts all over again.

Speaking of the Humira, there was just a new FDA release on the side effects of Humira. More to worry about. Anyone who is on any of the TNF blockers should be aware of this new risk. You can read up on it at http://www.fda.gov/bbs/topics/news/2008/new01879.html

Monday, September 8, 2008


Soccer started yesterday. That is Jacob in the center of the picture. He was very excited to play again. I was very hesitant to sign him up this season becasue of the uncertainty of his knee issues. I knew this was going to be the test to tell if his knee would be okay. He started out well. Soon after the game began I noticed him limping. He was running very slowly. Kind of hanging back in the field. I went over to the coach to fill her in on his JRA. She yelled out to him to see if he was feeling okay, He said no. She called him off the field. Jacob was complaining that his hip was sore. (he never complained about that before) He sat out for a little while. I asked the coach to keep him in defense because the running is not so intense. When the game was over, Jacob did not complain about anything he said he had a lot of fun. He was excited that he did well.
At night, putting him to bed I asked him how he was feeling. He said pretty bad. He asked me if I could rub his knee. I am just wondering if he will be able to keep playing. I guess time will tell.

Wednesday, September 3, 2008

First Day of school

First Day of 7th grade, Fourth Grade and Pre-school!

Tuesday, September 2, 2008

Updated Knee picture

When I look at Jacob's knee in a picture it seems easier to see the swelling. You can see the left knee has some fluid building at the top of his knee cap. The left knee cap isn't as pronounced as the right one. It is so frustrating to see that since January being on Naproxyn, then indocin, adding methotrexate, a full knee synovectomy in March, then adding Humira back in June and it still looks like this. I know it can be worse. I am very grateful that his disease hasn't spread much beyond this. He has has finger pain, ankle pain, and wrist stiffness but nothing very noticable but this knee.

Of course the biggest and most concerning inflammation, which is completely hidden from everyones view is the uveitis. I am incredibly grateful that this is quiet.

Who would of thought that in 2004, almost 5 years later we are still fighting this disease. Time presses on and we manage it day to day.

Tomorrow Jacob starts fourth grade. Jacob will meet his new teacher. Who I have informed already about his condition. I sent in ahead of time the brochure from the arthritis foundation, Your student with arthritis, The teacher's handbook on Uveitis. And my own personal letter explaining his condition. I have found that the more informed the teacher is from the beginning the better it will be if any issues come up. With Juvenile arthritis the disease is so unpredictable.
Uveitis in itself is extremely unpredictable. Things can change with both diseases within the same day. Flare ups can come and go. Then there are the medication issues. The meds cause him to feel unwell at times and can make him tired. Then there is the risk of him catching viruses because of the immunesuppressants. When school ended in June he was just starting Humira. So now being on two immune suppressants it should be interesting.

One day at a time. One doctor's appointment at a time. A lot of playing in between, and I am very grateful for that!

The night before the first day of school...

And all is quiet! The three little men are all fast asleep in their beds. I think this is the first night in a long time I am sitting here quiet so early! I don't think I will be up too long though because I will be up early to get Andrew on the bus for 6:35 AM! The boys were all a little anxious going to bed tonight. Andrew mostly. He is in Junior High now. I can't believe it 7th grade. He will be in a new school with a rotating schedule that will take sometime to get used too. He will survive we all did! I will be glad to get the first day over with. Getting back into routine will be a little tough.