Cassandra’s Journey with Juvenile Dermatomyositis

March 19, 2014

Hello, my name is Cassandra and I am 15 years old, soon to be 16. I have suffered all my life with chronic pain. I have dealt with seizures and severe gastro esophageal reflux since I was about three months old, the reflux went on until I was about two years old. My mom noticed I was having a hard time hearing, and they took me for a test. I ended up wearing hearing aids from the age of two until about four, then my right ear went totally deaf, and they told my mom that by the age of 12, I may not have any hearing left at all.

Today my left ear has gone down a little more to a moderate hearing loss. I am completely seizure-free though since I was 13 years old! I have a list of diagnosis that include Juvenile Dermatomyositis, Juvenile Psoriatic-Poly articular Arthritis, Fibromyalgia, mild cerebral palsy, Asthma, Hearing Impaired, Migraines, Psoriasis, Eczema and Mitral Valve Prolapse. While it stinks having all this going on, I know that I have to remain positive to keep going at a good pace in life.

Ever since I was 18 months old, I suffered with pain and with clumsiness. My mom used to have to carry me all the time. By the time I was 1 years old I was casted for braces that went into my shoes and on my lower legs and I wore them for seven years. At eight years old, I barely had any issues at all, except for infections for about four years. The doctors say I may have been in some form of remission even without a diagnosis at the time.

As I got older, the use of a walker and a wheelchair came into play. I had my original rheumatologist say it was growing pains, then muscle spasms and all kinds of things. I was seen by him from the time I was 18 months and up until I was 13 years old. I suffered relentlessly– undiagnosed for many years.

I was finally diagnosed in January of 2011 with Juvenile Psoriatic Arthritis and then my second major diagnosis of Juvenile Dermatomyositis in October of 2011. By this time, I was bound to a wheelchair or a walker if it was a good day. I was a 13 year old teenage girl with a wheelchair and walker. It is really strange to think about it, but it is a fact. The day the doctor came in to tell my mom that I had Juvenile Dermatomyositis, they told her, very coldly, to look it up on the internet because they didn’t have a lot of information about it. Then my mom and I decided that day that we had to make a difference and raise awareness to these diseases.

I along with many others have suffered with my joints swelling and major pain, my knees giving out on me, rashes on my face and body, muscle weakness, Gottron’s Papules, now I have a herniated disc in my back; my hips have started to disintegrate from the arthritis. The Psoriasis really affected my scalp and hands. It is almost under control now with all my meds that I take. I have endured numerous doctor appointments and hospitalizations. It makes life very difficult at times, but I am staying positive and will make it through this journey of life.

I have been through multiple surgeries and MRI’s, x-rays, labs, monthly infusions. I had to get a port placed in my chest due to so many I.V. sticks and my veins kept collapsing. The port made my hospital stays a bit easier since they have to access the port instead of my veins. Doctor visits are down to about four to five a month now that I am older and can express myself much better than earlier. They think that my hearing loss in my left ear and my deafness in my right ear is part of the autoimmune process that goes along with Juvenile Psoriatic Arthritis and Juvenile Dermatomyositis because they are in the autoimmune family, but they still are not sure. We really need a cure and research.

The doctors still do not have all my medications right because I still do continue to suffer daily; but I will not allow it to stop me. I am stronger than these diseases. I used to be able to do Tae Kwon Do and I won first and second place when I was seven years old, but I can no longer do that stuff. I was in a dance class in school so I could keep myself going and feel “normal.” I ended up having to take a break from it because I got worse, and am currently going through another “flare.”

I will conquer this; but I need your help. I take 23 meds daily along with my Methotrexate injection, that is a chemotherapy drug, weekly and go to the hospital monthly for infusions. My mom and I cannot do this alone. Please join our fight along with many others: Thank you for reading this.

Stay Connected

Sign up for updates straight to your inbox.