Read about other kids with myositis and tell your story too!
Ann Hi, My name is Ann Robertson. I was diagnosed in 1971 at age 16 with JDM. That was 40 years ago. My disease is still active and I continue on medications. In the past 5 years, due to muscle weakness over time, I am using a wheelchair. I am the Washington State KIT leader and enjoy a full and happy life.
Melinda PM Diagnosed Juvenile PM in 1990 I have 2 daughters and a loving supportive husband. I am 35 years old and was diagnosed at 12 years old with biopsy. Had a great team of Doctors at Scottish Rite Hospital in Dallas.
Dusty 4 yrs. old Male
Kory I am Kory, and I’m 10 years old. I have one older sister. We live in Martindale, Texas. I have JDM. I take IVIG, Prednisone and Cyclosporine. I go to Austin, Tx. to see Dr. Lisa Petiniot I like to play dress up, ride my bike, swim and arts and crafts and most of all play with my sister. I was 4 years old when I found out I have JDM. I was too young to understand, but my mom, dad, sister, and Jesus helped.
Madeleine Hi! My name is Maddie, and I am almost eleven years old. I live with my mom, dad, and sister Emma (she’s 6) in Minnesota. I also have a dog and two cats. I jsut started middle school and I am in fifth grade. I like to read, sing and act, play the oboe and use the computer. I am looking for other kids with JM to be e-mail friends. I found out I had JDM when I was three years old. I was too little to know what it meant. I just hurt a lot and I was tired.Right now I’m in a flare and am getting IVIG at the hospital get methotrexate shots at home (yuck!). I go to Gillette Children’s Hospital in St. Paul. I really love my rheumatologist, Dr. Akin. She’s really nice.
Richard Hello, My name is Richard Gay. I have had JDM since Sept 1964. My JDM is still slightly active and I take cyclosporine to keep my CPK in the normal range. I am co-chair of the Los Angeles KIT. I have a Ph.D in Engineering and a dozen patents. I was manager of a chemistry research group for ten years and a research scientist for 17 years before that. I use a walker or cane to get around. I drive a car and I still exercise at the gym three times a week. I am in year 46 of JDM.
Madeleine Hi my name is Madeleine Shepherd I am 10 yrs old and i have Juvenile Dermatomyositis. I was diagnosed with it when i was 2 and a half,i have big problems with my skin and am taking plaquinel at the moment. Im from australia and love to tenpin bowl and use my computer.
Bonnie Katie is age 12 now and has JDMS. These are 2 of our ferrets
Patrick I was diagnosed with JDM when I was 18. I have been in remission now 16 years. I am interested in helping more people become aware of Myositis and the difficulties that Myositis suffers and their families face. I work as admininstrator in our family business. We teach foreign students English. I also created a website for the school and I have a link to the Myositis Association and cure jm. I also create a group for myositis on facebook and to my great joy have also found other groups about Myositis on there too. I’ve also found several groups on yahoo groups as well. I think this is great ! I wish everyone on here gods blessings and that one day through gods grace we will find a cure.
Logan My name is Logan, and I am 11 years old. I live in Pennsylvania and have one sister, Neely, who is nearly two years younger. I love to play softball, soccer and competitive swimming. I love animals!!! I have a corn snake, a lovebird, a dog and a mouse. I like science and reading. I love to travel too. I was just diagnosed with JDMS in July 2007. I have no idea how long I have had it though. I was diagnosed a month after I turned 11. It made me mad, scared, upset and angry. I was not sure what would happen to me. I had to see lots of doctors. I was confused and I still am a little bit. Physical Therapy, Massage Therapy and ibuprophen helped me alot. Talking to my mom and dad helped me alot too.
Sarah I’m Sarah and I have JDM. I got diagnosed in June of 05. It’s not fun, and I spend lots of time with my mom. I got really clingy after I was diagnosed. I’m 17, and I love Ballet. I can’t do it as well as I used to since I got sick. I also love to sing. I had to switch schools when I got sick, but now I’m in Singers, the best in the school. I love Japanese things and I want to learn Japanese and go to Japan one day. I really love anime and manga. I like Kalido Stage (when i watch it I want to dance) I like Azumange Daioh! (Osaka and Chiyo-chan make me laugh. so do the teachers) I also love Sailor Moon. She helps me keep positive. I love all versions of Sailor Moon, anime, mange, live action, and the musicals too. I can’t get enough! Let’s just say I’m not your average teenager. I really love to talk, and I would love to meet other JMers. So feel free to contact me!!! I’ve got lots of energy (when not dealing with the side effects of methotraxte and JDM) and lots of really cool (and possibly wild) ideas! So if you want, contact me!!! See you later, and remeber, SMILE! it confuses people! Sarah
Lauren My name is Lauren Adelman and I live in Houston, Texas. I just turned 16 on July 8th and my summer is going great.
Joseph Hi, my name is Joseph and I have had JDM for 6 years now! This is a picture of me with my little brother Mike. We love all sports especially when we can golf with my mom!
Bethany 6 Dermatomyositis
Reagan My name is Reagan, and I live in Indiana. I am 8 years old (almost 9) and just found out I have JM. I feel kind of weird, since it’s rare, and I’m a little scared, but it helps that my parents, family and doctor are talking to me about it. I love eating, crafts, dancing, swimming, school activities (especially Student Council), and playing games. I have one brother, Henry, and one sister, Hannah.
Rachel I’m Rachel, and I’m 4 years old. I live in Maryland. I love to ride my bike, do gymnastics, swim, and practice my cheerleading. I was 3 ½ when I found out I have JDM. I was pretty young and didn’t understand what was going on. Now that I’m older, I know I have to protect myself from the sun and take medicine I don’t like. But I’ve gotten used to it, and I know it helps me feel better. Knowing that there are other kids who have the same disease I do makes me feel like I’m not alone. I really hope to meet them someday and make some friends with other JDM kids.
Makayla My name is Makayla, and I’m 5 years old. I love to dance and play outside. I like swinging and jumping on the trampoline. I love fairies. I started getting rashes when I was 3, but nobody knew why until I was 5. I just found out in February. I don’t know a lot about it except what problems I have. I am the same on the inside. I am glad there is medicine to take to make things better. I live in Colorado with my big brother and little sister. I also have a brother and sister who live in Kansas.
Annalise My name is Annalise, and I’m 8 years old. I live in Cincinnati with my parents and two younger brothers (6 and 2). I like Irish dancing, singing and dancing with friends, arts and crafts, reading, and match. In the summer, I like swimming and going to Kings Island with my family. I also like being a big sister! I found out I had JM just six months ago. Dad helped me by being there to play games, and Mom helped being there with me. Jolly Ranchers help for the bad taste in my mouth with the IV steroids. All of the doctors and nurses were nice to me.
Sarah My name is Sarah, and I’m 4 years old. I live in Atlanta and have a younger brother (1). I like to play board games, Barbies, and dress up, and to read books. I love ballet class, too! I just found out I had JM in September (2003). My mom told me I have JM and that it gives me a rash and goes to my muscles, but she says the medicine will help me. I don’t like all the doctors and tests but my mom and dad say I am a brave little girl. I liked seeing the pictures on the Web of the other kids my age who have JM. They look like me!
Sydney My name is Sydney and I am 5 years old. I live in Michigan with my mom, dad and sister, Shelby. I love to do crafts and paint pictures. I love to sing and dance. I was in our little theatre’s production of Jeckyl and Hyde. I was a flower girl in the wedding scene at the end. It was really fun. I got JM when I was three years old. I was very scared but mommy and daddy told me that it is ok to be scared and that I can ask them about anything that is bothering me. It helped me to know that there are other kids just like me that have this disease.
Nicholas Hi. I’m Nicholas I have myositis too. I really like to play baseball and ride my bike. Myositis doesn’t keep me from having fun!
Marlea My name is Marlea, and I am 10 years old. I like to play on the computer, listen to my CDs and tapes, dance and swim. I also love animals. I have two cats, Precious and Molly. I was 8 years old when I was diagnosed with JDMS. I was scared and sad, but when the doctor told me what I had, I said now you know what’s wrong with me, can you fix it? The most important thing was that all my doctors and my mom always told me everything that was going on with me. They all talked to me not about me. Every question I asked about my disease, they answered, and the hugs and kisses always helped.
Logan My name is Logan. I am six. I live in Alberta Canada with my parents and my little sister Teagan. My favorite things to do are to play, swim and Beyblade. I was one and a half when I was diagnosed with JM. I was too little to know and I grew up thinking it was normal to hurt so much. Having mom, dad and the doctors say I probably won’t have JM forever has really helped me.
Kay My name is Kay, and I am 4 years old. I love to dance and sing. Crafting with my sister is the best. My favorite animals are horses, and I want to take riding lessons when I get older. My parents found out I had JDM when I had just turned 2. I was too young to understand what I had and didn’t understand why I had to see all these doctors, but I knew I didn’t feel well. I understand now that I have JDM. I still don’t like all the doctors, but they are helping me, Mom says. Maybe one day I will help kids with JDM, too. I feel better now. My body hurts, but the medicines help me. Dad and Mom always hug me or carry me when I hurt. I need lots of hugs during the day because my body hurts. My brother and sister sit with me, too, if I am too tired. I love them all, and they love me.
Abigail My name is Abby, and I am 6 years old. I have a sister and like to play kitty with her. I also like to swim at the YMCA. I was 2 when I found out I had JM. I was pretty young, but I guess I just didn’t like it. The IVIg medicine helped me the most. It felt great to have some of my rash gone.
Lindsay Hi, My name is Lindsay and I am 8 years old. I like riding my bike, playing with my kitten, and teasing my big brother and sister. I also love chocolate milk. I was 3 years old when I got JDMS. I was too little to remember how I felt. But I feel a lot better now, because I don’t feel so alone, because I know there are other kids like me out there! My medicine and the Lord helped me to feel better. So did my Mom and Dad and my friends.
Mackenzie Hi my name is Mackenzie. I am six years old and have Dermatomyositis. I wear a hat every day to protect my skin from the sun. The best part about this is that my Mom gets me so cool hats. Sometimes we even decorate them with things that I love. My favorite animal is horses. My Daddy said I can get one when I am 10 years old. I can’t wait!!! I am going to name my horse Star. She will be brown with a white diamond on her face. She will also have a black tail and mane. I also love to read. I have a brother named Dayton and a sister named Isabella; they are twins. I love being a big sister. There is so much I have to teach them. I have a dog name Nikita and a cat named Oreo. I also have my very own fish named Star. I love animals and hope to be a vet some day. I have a friend that has JDM I met online. She is very nice. I hope that someday we can meet.
Beau My name is Beau, and I’m now 11 years old. I just found out in November (at age 10) that I have juvenile dermatomyositis. I was relieved to know that something was actually wrong. I hadn’t been feeling right for 14 months, and the doctor just kept thinking it was growing pains. I think I forgot how it feels to run and play, but support from my family and friends has helped a lot. I loved to play football before my disease. (This picture is before my diagnosis of JDM.) I started playing tackle football at age 7; now I can’t wait to get well so I can play again. I also love to read and be outside with my friends and sister. I live with my family in Nevada.
Taylor My name is Taylor, and I am 11 years old. I live in Delaware and have one older sister. I like to bowl, swim, play video games, and do charity work to help other kids. I am a Girl Scout. I was 7 years old when I found out I had juvenile dermatomyositis. That was in October 2003. I was scared because I could not walk. I was real weak and everything just hurt. My skin had red rashes on it and my face swelled. My family and friends have helped a lot, along with the help of my doctors and nurses at Children’s Hospital. A lot of medications such as IVIG, prednisone and Plaquenil helped me. Some others they tried but made me sick were cyclosporin and methotrexate.
Ricky is currently 12 years old. He was diagnosed when he was 6 but showed symptoms for a long time before that. His biggest complaint is the time this disease takes away from his free time – all the doc visits, the iv treatments, the bloodwork, ths shots. He is basically a happy active boy despite it all. We are really hoping for remission and are currently working on reducing his methotrexate.
Anna I live in Maryland. I am almost 9 and have a twin sister, big brother (13), and big sister (almost 15). My twin sister does not really look like me—I have blond curly hair and blue eyes, she has chestnut brown hair and brown eyes. I like to swim, do arts and crafts, and play basketball. I like to hang out with friends. I like to play with my cats and my dog a lot. At my dad’s house I have 2 cats. At my mom and Dave’s house I have a dog and a cat, both are black. They are good friends. My mom and dad live only 6 blocks apart. I also like to shop and pick out my own clothes. I like to read and play board games and card games. My mom and twin sister and I play a lot of Skipbo and Parcheesi. I was almost 3 when I found out I have dermatomyositis. I was too little to know much about it. I did not like the blood draws, and the prednisone made me cry a LOT. Mommy and Daddy helped me most.
Zachary I’m 10 years old. I live in Florida with my older brother. The thing I like to do best is bowling. I like to ride my bike and my go-cart too. I was 9 when I was told I had JDM. I didn’t know how it was going to affect my everday life. Who helped the most? My family being there for me.
Jessica I’m 12 years old. I live in Florida with my two brothers. I enjoy Girl Scouts, making jewelry and playing the clarinet. I was diagnosed in October 2004 with juvenile dermatomyositis. I am scared and do not like the side effects of the prednisone. I just visited the Children’s Hospital, and they are starting me on IVIg.
Jasmine I am 11 years old. I was 5 years old when I found out that I had JM. I was very sad. It helped when my doctors and my mom helped me to understand what was going on with me. I like to play my PS2, ride my bike, play basketball, go out to eat, etc. I live with my family in South Carolina.