Good Evening! My name is Kim and I am a patient, and huge fan, of Dr. Foster’s and the work of the foundation. Thank you for inviting me to share my story with you. When I was asked to tell my story, I thought about it for two reasons. As my very protective family (some of whom are her tonight) know very well, I don’t like talking about my medical problems. Whenever I hear my sisters telling people about me, I cringe when I hear their reaction to my situation. I cringe mostly because I don’t want people feeling sorry for me. As you will hear in my story, I am one of the lucky ones. And this is why ultimately, I decided it is important that I do tell my story. My other hesitation in speaking tonight initially was that my story isn’t really that interesting. Then I laughed because that isn’t true at all, I realized that doctors have been telling me that I am interesting since I can remember. Not that that is a good thing. When you go to a cocktail party, it is great to have people tell you that you are interesting. When you go to a doctor, the last thing you want to hear is that you are interesting. You want them to say, oh, this is textbook, nothing I haven’t seen a thousand times. Piece of cake. I never hear those words, and as my wonderful, loving and very hard working husband can tell you, I have had lots of doctors. He jokes with me that if he had known what a medical liability I was, he may not have popped the question.
I am sure that many of you are sitting here thinking that I look like a healthy, 44 year old wife and typical stay at home, mother of four kids… and two dogs. As we know, looks can be deceiving.
Before I go into what led me to Doctor Foster, I want to start with the happy ending. My happy ending started July 8th , 2009, the day that I walked into Dr. Foster’s office. I have been seeing him every month since July 2009 and my vision in my right eye has gone from 20/200 when I met him to 20/25 in that eye today. Without him, I probably would have ended up blind in that eye, or both for that matter. With extreme humility and gratitude, that is where I am today, 100% thanks to Dr. Foster for his philosphy of Never Giving Up and Doing Whatever it Takes, which is the building block of the foundation’s mission.
My story starts at age 16 when I was in high school. I grew up in Brattleboro VT and was a super happy athlete that played three varsity sports. My joints always bothered me, mostly my ankles and wrists, at that time, so my coaches would always tape them up before games. Nobody ever asked why this happened, they just tried to fix it so I could play. I was the third girl born to a dad who lived and breathed everything Red Sox. At age 45, he knew there was no other chance of him having a boy so he basically turned me into one. I never complained that my joints hurt because he always said to me “you are as strong as an ox, we have never been sick a day in our lives.” Fortunately for me, my parents were smart and proactive. They didn’t agree with the VT doctors who did nothing for a 16 year old girl that had pain in her joints and constant fluid in her ankles. My parents found a great doctor in Hartford CT who immediately diagnosed me with JRA. My dad literally had to carry me into the doctor’s office the day we went there because my ankles were so swollen with fluid that I couldn’t walk. The first thing Dr. Parker said to me was that I was a very interesting case. He started me on arthritis medication and I improved quickly.
FF 10 years, I am now 27 and a newlywed living in NYC with my wonderful husband Neil. This time, Neil has to be my hero and carry me into the HSS after I wake up in excruciating pain with fluid on my knee. After removing the fluid, my doctor told Neil he had never taken so much fluid off a knee at one time. And he had been practicing for over 30 years. He thought it was very interesting. All this time, I remained on medication, and on and off steroids to control all of the various swelling.
Luckily, my entire 30’s decade, I had four kids and my arthritis would go into remission with each pregnancy. I did have two orthoscopic knee surgeries in the meantime to keep my knees from swelling, and again, was on steroids in between pregnancies to control swelling. My rheumatologist was waiting for me to be done having kids before putting me on more serious arthritis medication. I was no longer considered to have JRA, now the doctors simply told me I had RA.
In 2007, the year I turned 40, my Uveitis started. In March of that year, I began to notice a little blurred vision and assumed that I needed to get checked for glasses. Then I started having a red, irritated eye to go along with it, and assumed it was my allergies. With four small kids, there was no time to worry about my own medical issues. I continued ignoring it until one morning I walked outside into the sunlight and I couldn’t even open my eyes. The pain was excruciating. I went back inside and saw how red my eye was. Looking back on it, what I should have done, was call my friend who is also an eye doctor. What I did do, was start googling eye problems. Of course, I came to the conclusion that I had brain cancer. I had just seen an episode of Gray’s Anatomy and the guy had the same symptoms as me and he died from brain cancer. Since I don’t want to immediately freak my husband out, I then call my ophthamologist friend, telling her I was sure I had brain cancer. She then makes me come in asap and is mad at me for waiting so long. She tells me I have uveitis and that as long as it hasn’t gone to the back of my eye,it isn’t a huge deal and she can treat it with steroids. So far so good. It hadn’t gone to the back of my eye. She is very conservative and puts me on mild steroid drops. It doesn’t get better, it actually gets worse and travels to the back of my eye. At that point, she decides I should go to a retinal specialist who is better equipped to handle these things. He is the uveitis guru…. in CT. I see him for about a year, and he continually gives me steroid injections in my eye. To me, I would rather have four more children than get another needle in my eye. It is the worst possible thing to have done in my opinion. It would work temporarily and then once the steroids wore off, my symptoms would come right back and sometimes worse than before. Finally he tells my ophthamologist that he doesn’t know what else he can do to treat me….and as always, that I am an interesting case. …
Fortunately for me…my friend and eye doctor, doesn’t give up on me. She is determined to find someone who can help me. She tells me that this condition can occur in both eyes and I can’t even imagine how I would function had this uveitis spread to both eyes. Many people do have it in both eyes, I wouldn’t have been able to lead my daily life of driving and taking care of my family. She has to find me a real GURU. She searched in NYC which is close to my home in Greenwich CT. No luck. There is one guy but not exactly what I need. BUT, she is super excited to say she HAS found the perfect doctor, he is a uveitis specialist and also a rheumatologist. She is nervous to tell me he is in Boston. Boston? For me, that is awesome news. I love Boston, my sister lives there so I will get to visit her! And of course, my beloved Red Sox are in Boston… I couldn’t wait to meet Dr. Foster. She tells me that it may be difficult to get an appt so soon, but somehow she gets me in asap…..probably because I am so interesting! So I get to his office and I am super nervous. I don’t know what to expect. The first doctor I meet is Raphael Rosenbaum, a fellow of Dr. Fosters, It is his first week and he is trying to figure out the computer system, so he is nervous too. I make small talk to calm us both down, so I ask him if he is a Sox fan and he laughs. He tells me his from NYC and a huge Yankees fan. Are you kidding? This isn’t what I expected! We ended up becoming good buddies during his year stay there. After he examines me, Dr. Foster comes in and spends a ton of time with me getting to know my history and then he asks me all of these (what I thought were random questions.) Nobody had ever asked any questions like this at any of my many other doctor visits. He sat quietly and absorbed all of this information then he asked Dr. Rosenbaum to order some specific blood tests that I hadn’t had previously, primarily one to test for HLaB27, which is another auto immune disease. I thought I had had every blood test known to man. I was trying to stay calm but was getting nervous. He must have sensed this because he immediately explained his rationale for what he was doing. I waited for the test results and then Dr. Foster led me, along with Dr. Rosenbaum and another visiting doctor, to a large conference room. He closed the door. I thought, oh no, I am going blind and he has to give me the news. The first thing he said was that I was an interesting case. And this was the first time that I wasn’t really upset by that. He seemed happy to accept my challenge. He seemed determined to win. He said that I had significant damage to my right eye. And then without missing a beat, he said that he was going to do his best to restore my vision to what it had once been. I had never been so relieved. This was the first time that I had ever felt so completely sure that I had found the right doctor. He explained to me that I had uveitis caused by HLB27. All of the other doctors assumed it was due to my arthritis. He said that without knowing the underlying cause for the problem, it is more difficult to cure the problem. My other doctor was just “throwing sand uphill” by pouring steroids at it without knowing why it kept recurring and not moving along when the steroids were not working. And this was supposed to be the GURU near me. Dr. Foster is brilliant, I have no doubt of that. I owe my vision to him and for that I am truly grateful. My kids complain on days when I have to go to “that doctor Boston”…until I explain to them that I could have lost my vision if it weren’t for that doctor in Boston. I ask them who would drive them to their zillion activities if it weren’t for that “doctor in Boston”….For me, it is a miracle that I found this doctor in Boston.
As I said in the beginning, many people feel sorry for me when they hear my story, because of everything I have been through. What people don’t understand, is that I am one of the fortunate ones who is able to get treatment, able to have access to the best doctors. I have a loving family who supports me on every step of my journey. I feel blessed. There are so many people who are not afforded that luxury and for those that are not able to come to Boston once a month to be seen by Dr. Foster, it isn’t fair. We need so many more Dr. Fosters in the world. We need him to train more Dr. Rosenbaums to carry on into the future. He saved my vision and countless others as well. Think of all of the others out there who are not able to do anything about it. The children who are not properly diagnosed, the elderly who cannot see well enough to get themselves here, the poor who cannot afford to get here, and the thousands of people who just never get the correct diagnosis, I was almost one of them. It is hard to imagine what my life would be like now had I not found Dr. Foster. The most wonderful thing about his Foundation is that he is training fellows from all over the world how to diagnose and treat uveitis. My hope is that someday, proper treatment will be available to everyone around the Globe who needs it. I am happy to report that now NYC has 3 Uveitis trained specialist, one of which is Dr Rosenbaum, thanks to Dr Foster and the Foundation’s fellowship training program.
The entire staff at MERSI is beyond compare. I am indebted to each and every one of you. Thank you.
Click here to listen to
Uveitis and Steroid-Sparing Therapy
Presented by C. Stephen Foster, MD, FACS, FACR
Audio-Digest Ophthalmology Volume 56, Issue 15