Patient / Family Letters
Several families have found it helpful to talk about their feelings and share them with others. As a way of helping other families, they offered to share their thoughts and feeling with you. The following pages have letters from parents, as well as children, with different rheumatic diseases. We hope these letters are helpful to you.
A Twelve-Year-Old With Juvenile Rheumatoid Arthritis (JRA)
I remember a certain day in April when my life changed forever.
On this day, my family sat in our living room waiting for a call from my doctor. He would be calling us about a blood test I had taken that would tell me if I had juvenile rheumatoid arthritis.
That call finally came. By the expression on my mother's face, I knew the test came out positive. As I went over to my father and cried on his shoulder, the thought crossed my mind, "Why me, did I do something wrong to deserve this."
My doctor told my mother to take me to Dr. Passo. On the way there, my mom held my hand and told me we would get through this as a family. Since then, I learned a lot of things. I've learned how much God, family and friends mean to me. Without them, it would be hard to get through the hardest times.
Even though having any disease is not fun, it can change your life for the better. Arthritis brought my family closer together. Even though it wasn't a good experience we got through it together, not as one individual, and we found out that even in the hardest times, we love each other as much, if not more.
I think arthritis made me stronger in my belief in God and healing diseases. Whenever I would read a section in the Bible about God healing the sick, the miracle never sunk in. But for me to be in such a bad condition and be healed, was a miracle come alive for me. This time though, it sunk into my mind and body forever.
During rough times, I also found who were my friends. My definition of a friend is someone you can trust to be there when you need them. My friends stuck up for me and helped me whenever I had flare-ups or when I wasn't feeling very well.
When you're going through any disease, you learn a lot of things – how strong you are, how much your family means to you, and who are your friends – to name just a few.
I hope the best comes to you and your family in this situation.
Parent of a Fifteen-Year-Old Girl with JRA
Having a child with arthritis and being a single parent was the hardest job ever set before me.
I started keeping a daily journal of my child's illness, including information for myself and the doctor. My oldest daughter felt neglected at times, because she was being shipped to relatives when we were in the hospital. I had to make time for her, my sick child and maintain my full-time job.
With my daughter's disease, she had very high fevers that would occur every night. Those were the times I could remember being very scared. All I could do was try to keep her comfortable and wait for the fevers to break. It is very frustrating when all you can do is watch and wait. I learned a lot of patience.
School began a month after my child became ill. She was starting junior high at a high level academic school. I knew she would be unable to attend on a regular basis. Unaware of the laws protecting children with medical disabilities, I obtained the manual, "Educational Rights for Children with Arthritis." This manual enabled me to request from the school officials the necessary requirements that my child needed in order for her to attend school. At first they were not receptive to the idea, but I would not give up. They finally cooperated and my child attended school whenever she could, and I picked up her school work when she could not attend. My daughter did excellent! At the end of the school year, she was asked to participate in their honor classes the next year.
I believed in what my daughter was capable of doing despite her disease, which helped her to believe in herself. As a result, our relationship has grown.
Parents of a Three-Year-Old Girl with JRA
When our son, David, was first diagnosed with arthritis, we were very upset and concerned because we did not know anything about this disease. But both Drs. Passo and Lovell were wonderful in helping us to understand everything about it. We were very afraid of how it would affect his walking because they had discovered it in his left knee. Then on one of his regular monthly visits to Cincinnati Children's, they discovered arthritis in his right wrist. David was given medication to take twice a day, and we performed physical therapy with him three times a day. As a result of this, his condition has improved so that he had complete mobility. His progress has been so well, that our regular check ups have been reduced from once a month to every three months.
Although David's prognosis is good, we still live in fear that the disease may worsen. We watch him running and playing with other children, and we have mixed feelings. Sometimes, we experience the simple joy of watching a healthy three-year-old at play. During those periods, we are very thankful that his arthritis is under control. We are also thankful for the excellent care and treatment he has received at Cincinnati Children's.
Then there are other times when we think we see a limp. Or we look at his knees and wonder if they look more swollen than yesterday or last week. We wonder how the disease will affect David later in his life. Will he have a full mobile life or will his participation in athletic activities be curtailed? Or, in our worse nightmare, will the arthritis flare up in a systemic problem and drastically change all of our lives?
We do not know the answers to those questions at this time. We probably will not know them for many more years. But until then, we take each day at a time with David, watching him play as any three-year-old should.
And we take each day confident that, whatever may happen in the future, we will receive support and care from the Special Treatment Center for Juvenile Arthritis.
A Fourteen-Year-Old Girl With Dermatomyositis
I am a fourteen-year-old girl and was diagnosed with dermatomyositis in October of 1994.
When I was first told about my disease, I was very scared and confused. I had so many questions that my family and doctors answered.
Last year before I got sick, I went swimming every day, rode my bike, and played basketball. I first got a bad rash up my arms, all over my face, and down my legs. We thought it was dry skin because it itched all the time. As time went by, I started getting tired more and I couldn't do the things I used to do. For about a week, I stayed home from school and just laid around. It was hard for me because I had to catch up on my homework that I didn't understand.
My parents took me to Doctors Urgent Care and they told us nothing was wrong with me. We knew there was because I could barely walk and my arms and legs were weak.
My mom called a dermatologist and made an appointment with him. He took a skin biopsy and had my blood tested. He then referred me to a specialist at Cincinnati Children's.
I stayed at Cincinnati Children's for three days to be observed while I received IV medication treatments. Also, I had a muscle biopsy (minor surgery) done on my thigh to see how bad my disease was. It was so sore that I didn't even get out of bed the first day. My doctors checked in on me often and they also kept me informed of my progress.
After they started me on my medication, I slowly got better. For the first week, I was only allowed to go to school for half days. I could not ride the school bus because I couldn't get up and down on the steps. My mom drove and picked me up from school. I then started going back to school full day,s but I got out of classes early so I would not get tired. I was happy to see all of my friends. I was not allowed to play in gym and I had to quit band because I didn't have the strength to blow my trumpet. I had problems with my chest, swallowing hard foods, and pop would fizz out my nose.
For a while, I had to go to the doctor's office every week and get IV medicine treatments. I also saw physical therapy, occupational therapy, and my dietitian because my medicine made me gain weight easily.
I gradually was allowed to start riding my bike, playing basketball, walking, swimming, playing my trumpet, and now playing tennis. I am still building up my stamina. I am off my IV medicine treatments and I go into the doctor's office monthly to have my blood tested and do time tests to make sure I am not going into a relapse.
I thank God for getting better and I am able to do all the things I used to do!
Mother of a Twenty-One-Year-Old With JRA
On August 22, 1974, our daughter entered this world. She was a tiny thing, weighing in at under five pounds. She was welcomed home by her older brother of three years and a Beagle dog. She was a challenging baby, colicky for almost six months. I have often said that if she had been our first, we would not have had any more. She was a busy toddler, walking, running, doing all the things that toddlers learn to do. Little did I know, in just a few months, our family would begin a great battle with a not so well-known childhood disease.
In the Spring of 1978, my daughter woke up with a rash, covering the upper part of her body. I took her to the doctor, and he said that she had scarlet fever, gave us some medicine and sent us on our way. Over the next two or three days, the rash got worse, and she began to run very high fevers. The fevers were so high that we rushed her to the hospital. The hospital admitted her, telling us that they really didn't know what was wrong with her.
After about seven days of testing and elimination of leukemia, spinal meningitis, and other serious diseases, the doctor said, "Your daughter has juvenile rheumatoid arthritis (JRA)." How can a baby have arthritis? It's an old people's disease? We were very scared, but grateful, for now we at least knew what was wrong. However, over the next ten to twelve years, I wasn't always so grateful. I can't begin to explain the pain my daughter went through. I felt so useless for her, so tired.
My husband was the one who made our livelihood, so I became the primary caretaker. I began to educate myself about JRA, getting books, contacting the Arthritis Foundation, reading all I could. The more I read, the more scared I got. For our daughter, this disease affected her whole body. This disease is a personal one, not affecting everyone the same. So what happens to one does not mean it will happen to you.
Our daughter at times had to be more dependent on us, often needing help with day-to-day activities. The pain comes and goes for her (and me). I can honestly say I hate this disease, for it has changed many things for my daughter. Believe me, if I could have changed anything for my daughter, it would be this disease. However, I can tell you that I thank God for her every day as she has taught me so much. I have met many people along this journey and for that I am very grateful.
Our daughter will be 21 soon. She graduated valedictorian of her high school class and is now in college. Her life is better, not pain-free yet, but she is not so dependent on us anymore. As I look back over those years of fighting the JRA, I thank God for our doctor who was always there for us, for good insurance, and for family and friends who helped when they could. What advice do I have for moms whose children might face this disease? Do the best you can and know that it is OK to cry, scream, and be afraid. These are all feelings that are part of being a parent whether you have a child with a disease or not.
Mother of a Three-Year-Old With Dermatomyositis
I am the mother of a three year old girl with severe dermatomyositis. She was diagnosed when she was eighteen months old. She was my first child. I found out I was pregnant with my son just after my daughter was diagnosed.
Upon my daughter's diagnosis, the emotions were confusing and overwhelming. She was very ill and had complications in short order that made her situation even worse.
Fighting so hard to get her stabilized left little time to deal with emotions. Once things calmed down a little, the emotions unexpectedly hit like a wall. First, the grief over "losing" my child – obviously dreams and expectations for the future change in the face of chronic illness. Second, guilt over not having seen what was happening to my daughter sooner. This was made worse because I have medical training. And thirdly, the sense of complete impotence as a parent alternately paralyzed and angered me. No longer was I able to protect her, help her, and provide for her needs. Lastly, fear. Would today bring another relapse? Would the insurance continue to hold up? Would this complication take her from me? It took months for me to begin to sort through and face my feelings.
It can take a while since all the other aspects of life don't stop when your child gets sick.
My daughter is doing well now, but I know there are no guarantees and her future is filled with doctor appointments and medication. My son is healthy, but that doesn't stop that nagging tendency to watch him more closely. I am learning to take one day at a time and to deal with problems if and when they show up. It takes a lot more energy and work to do this than most people understand. Talking with other parents and anyone with a real sense of the everyday pressures having a chronically ill child has helped me a lot.
Despite it all, I am thankful for today and to watch my children playing together. I find myself smiling – knowing there was a time I felt like I wouldn't really do that again, and that makes me smile even wider. Oh, how I thank God for that!
Fifteen-Year-Old Girl With Systemic Lupus Erythematosus (SLE)
I was diagnosed with lupus about 2 years ago. The lupus attacked my kidneys. I gained 70 pounds and my knees have started to deteriorate due to the prednisone.
I also lost some of my hair due to the Cytoxan chemotherapies I underwent.
Lupus is an aggravating disease. It causes you to have limitations you wouldn't normally have. Some days I feel great and others I don't want to get out of bed. I was made fun of a lot because I was fat and walked funny.
But I learned that the kids were cruel because of different situations. Some were scared that I'd pass it on to them. But after explaining it all, I wasn't made fun of as much. Face it. Some kids are just mean. I guess the best thing to do is just listen to the doctors and be patient.
I started 60 mg of Prednisone. Now I am on six mgs. I got off my chemo and my hair grew back. I'm losing weight slowly and I've made better friends. Friends who will listen and support me no matter how sick I get, or how ugly I look. Friends who will stay inside with me from ten am until 2 pm when the sun is too bright.
Be patient with your parents as well. They can be over protective, but they really do care. This is new to them and just as hard, only they are watching, not receiving treatments.
Ask your doctor for names of others withl lupus. Finding someone with the same complaints and experiences will help you feel not so lonely. It's scary feeling alone, but there are so many with Lupus who feel the same way. I know I did.
Don't give up!! Try to control the lupus. Don't let it control you. Don't quit trying to be a normal kid. You are still the same person, only now with more originality. It might seem hard to go on at first, but it gets easier.
Parent of a Ten-Year-Old Boy with Sarcoid Arthritis
When my son, Benjamin, was officially diagnosed with sarcoid arthritis, we were very concerned. I use the word "officially" because we went several months of trying to diagnose the problem. Being that I am a mother with sarcoid arthritis – my trained eye from day one was searching to see if my first born son would have the same condition. They had said there was a 50 / 50 chance of our children having JRA.
After months of watching Ben's puffy hands and fingers not recede, we decided to bring it to our doctor's attention. After the usual tests were run and came back negative, we were advised to allow Ben to receive a biopsy of his conjunctiva. This proved successful and to our dismay, Ben was positive. I remember, after hearing the confirming news, tears welled up into my eyes as I sobbed, not wanting to accept the information as being true.
But years have passed and Ben, now 10 years old, is a great son and a pleasure to be around. He's like the average kid, he drives me crazy sometimes, but we love him. We, daddy, Ben, and I, deal with every flare and hard situation that arise with prayer and hope.
Thus far God has brought us through every circumstance and has blessed us with numerous doctors who have undoubtedly prayed and dedicated their lives to such a cause as this.
Father of an Eight-Year-Old Boy with JRA
My son was two-and-a-half-years-old when he was diagnosed with JRA. He was hospitalized at first and had to go through test after test, and physical therapy to straighten his bent leg. This was really hard. I remember thinking – why him, why now? He's so young. Will he walk again, will he run and how much pain will he gave to go through? Will it ever end?
The pain and suffering my son has had to endure breaks my heart, yet he never complains. He is a bright and happy eight-year-old now, with many friends and interests. JRA is a part of our life – but not our life.
Sister of a Boy and Girl with JRA
Mixed emotions. I am a sister that has an older brother and younger sister with JRA.
It was kinda weird that I didn't get the disease. Since I'm in between the two of them, I thought it was strange that I didn't get JRA. I was glad that I didn't get the disease but felt sorry for my older brother and younger sister.
I don't consider myself with being related to disabled people. I treat them as I would regularly. I have found that not all people think the same way. When my brother was little, I remember a kid made fun of his ankle brace. I felt horrible for my brother and wondered why!
At other times I feel angry that they use their disease to get out of things or that they want to be sick, so they won't have to do something. I sometimes just want to get sick, so all the attention would be on me. I know my parents love us all and worry about all of us.
In these past years, I learned a lot about the disease of JRA. I learned that my older brother and younger sister are really feeling pain and that their not using their disease. I also learned that the whole family has to pull together and help each other.
Best of luck to all of you!
Eight-Year-Old With Polyarticular JRA
I was 8 years old when I was diagnosed with arthritis. That was in March of 1994. I was worried that I might not be as good anymore, and that that no one would like me anymore. I worried that I couldn't do that much stuff, like jump rope, take gym and other things. I thought that my brother, who also has JRA, would be mad at me because I have the same disease. I also worried that because I couldn't do things that my friends would leave me out of the fun. But I felt better when I found out that my friends understand. I know my team of doctors well because my brother had the same doctors. I like him a lot.
I think if I do my exercises and take my medicine, I will be OK. I don't like having JRA, but its OK because I get fun doctors.
Seventeen-Year-Old Girl With JRA
Hi, I'm a 17 and 1/2 years old and I have JRA. I was diagnosed with JRA on October 16, 1986. I had knee surgery in 1990 and my hips were replaced in 1992.
When I found out that I had JRA, I was 8 years old. I was also confused, angry, scared, all at the same time. Sure, I'd heard of arthritis, but, like most people, I thought that arthritis was something that only "old people" got, not people my age. I know it can be hard to accept, but just because you have arthritis like me doesn't mean that life is over.
There may be a few changes, like you might have therapy. But just because there may be a few changes in your life, doesn't mean you have to give up your hobbies. As a matter of fact, my hobbies haven't changed much since I was 8. I still love reading, writing, listening to music and playing, collecting and sewing for my dolls. But playing with and sewing for my dolls is wonderful hand therapy. Also a doll can be a comfort when you're feeling sad, angry or scared.
But keep your mind and body active, and remember you can do anything if you put your mind to it. Never, ever give up!
Grandmother of a Two-and-a-Half-Year-Old With JRA
When my grandson was two-and-a-half-years-old, he was admitted to Cincinnati Children's with a very painful and swollen knee and couldn't walk. The doctors thought that he had a deep bone infection. After many tests, they concluded he had JRA. My first reaction was one of relief that it wasn't a life threatening disease, but that soon turned to sorrow when I saw him cope with all the pain, shots, blood tests, etc., and I marveled at his courage.
I think the hardest times now are when he has a big flare-up after many weeks of feeling good. My heart aches for him at these times but I have great faith in the power of prayer and in his doctors. I'm praying for a complete remission soon.
Fourteen-Year-Old Boy With Polyarticular JRA
In the spring of 1990, I was taken down to Cincinnati Children's not knowing exactly what I was really there for. I was eight-years-old then. I thought I was there for doctors to help me with a bump on my hand. When I got to the hospital, I was taken into a room and examined. They told me that they were my team of doctors, and that they would help me through the years of my JRA. I really didn't know what they were talking about, but from the look on my parents' face . . . it wasn't good. Then I was 8 years old and didn't realize that JRA was. But now, I'm 14 years old and I understand my disease a lot better. I used to think it was just an excuse to miss school, but it wasn't. It is a disease that effected the whole outcome of my life. A disease that decides what I can and cannot do. It is a disease with a catch. This disease affects me greatly!
I have been through many different stages that were not fun and were very painful! When I went through these stages, I depended on my family and friends to keep my faith and hope. They have all helped me realize that I can overcome this disease and live a wonderful life, yet to come. The disease process has pulled me and my family closer together; and with that life I have had the courage to fight my JRA. I am now fourteen-years-old and feel that I have overcome my disease . . . to an extent.
For more information about the William S. Rowe Division of Rheumatology at Cincinnati Children's, please contact 513-636-4676.
