Fatigued hands, sore joints, back pain, easily bruised skin and overly stretchy skin – Melissa Rose had all those symptoms for years and had no idea why.
Melissa Rose (pictured) is ASB president, president of the Key Club (a service club) and she plays alto saxophone in the Jazz Band, Marching Band and the Symphonic Winds. (Courtesy photo)
An A student, the Hemet teen trudged on, just dealing with her symptoms for years because she had no choice.
It wasn’t until Melissa was a freshman in high school that she was finally diagnosed with a rare condition called Ehlers–Danlos Syndrome (EDS). EDS is a group of inherited connective tissue disorders caused by a defect in the synthesis of collagen. The collagen in connective tissue helps tissues to resist deformation. Depending on the individual, the severity of the syndrome can vary from mild to life threatening. Symptoms include joint pain and dislocation, and stretchy skin that bruises easily, among others.
EDS is a lifelong condition for which there is no cure and no real treatment other than avoiding sports to prevent joint and back injuries and taking over-the-counter painkillers when necessary. Melissa said she might be able to take collagen shots when she is older to alleviate the symptoms.
“When you squeeze her hand or any part of the body, it’s kind of like when you’re squishing those squishy balls,” explained Melissa’s dad, Bob Rose, a math and science teacher at Bell Mountain Middle School in Menifee.
“You can pop joints out easily because nothing is connected the proper way. It happens to her a lot. She can be sitting there studying and all of a sudden her spine pops out of joint. When she squeezes a pencil her finger joints can pop out of joint. She’s had to learn how to write using different finger joints,” Melissa’s dad said.
“Sometimes if I lay down the wrong way the joints just sort of slide out of position. I just have to lay there and wait for it to correct itself,” Melissa added.
Nevertheless, Melissa, 17, thrived over the years and excelled at Paloma Valley High School in Menifee. She has a 4.4 grade-point average and will attend UCLA in the fall. She is thinking of becoming an engineer with an emphasis on the environment.
Melissa is ASB president, president of the Key Club (a service club) and she plays alto saxophone in the Jazz Band, Marching Band and the Symphonic Winds. She’s also in charge of local community service projects for the California Scholarship Federation and has visited Russia twice on missionary trips.
Melissa hopes to raise awareness of her condition, which isn’t apparent to those who don’t know her. She urges people to be patient with people who might have an illness or disease that isn’t obviously seen on the outside.
“A lot of times you kind of don’t understand what other people are going through,” she said.
Her dad explained, “She would do just as she was told at school. She would cry in pain at home. The doctors had no explanation and gave her the same line as the PE teachers, telling her that she needed more physical exercise to strengthen her muscles and joints.”
Compounding the problem, Melissa was struck by a car while crossing the street in front of her house in Hemet when she was in fifth grade. She suffered several broken bones including skull fractures and facial paralysis for a time, for which doctors had no explanation. While she always had a problem with fatigue in her hands, it grew worse after the accident.
Her pediatrician didn’t detect EDS. Melissa said she was relieved when she finally saw a geneticist and was diagnosed. “We knew I had something and were relieved to know what it was and how to deal with it,” she said.
Melissa had to give up playing volleyball freshman year in high school after she was diagnosed but she says she gets exercise without hurting her back or joints by hiking and walking her dog.
Melissa’s dad couldn’t be more proud of his daughter, who didn’t have any special accommodations in school and showed sheer grit and determination.
“She is an amazing student and she’s overcoming everything,” Bob Rose said. “She always pushed herself to extraordinary degrees. She learned to operate well beyond her limitations and always exceeded expectations. I’ve been told by her teachers that she is a teacher’s dream. I can say without reservation that from birth she has been a father’s dream as well.”
Amy Bentley is a local writer and regular contributor to SWRNN.
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Sounds a lot like my daughter, who also has EDS. Congrats to this young lady. Keep with the music. I was also hit by a car once as a girl, and with EDS its a difficult journey. However, I REALLY wish these news organizations would stop saying that OTC pain meds manage EDS pain. That misinformation is really rattling. Many journal articles tell a quite different story, and it would be nice if reporters fact checked such things. Go to the NIH bookshelf and READ about a condition before making sweeping statements, as misinformation like this hurts ALL OF US. One: Advil et al is so So SO bad for EDS folks’ GI tracts. Its like asking for a bleeding ulcer. Two: Tylenol is usually only beneficial when used in conjunction with other meds. At 14, my daughter has already been on meloxicam for two years, sometimes in conjunction with tylenol, and at over 40, I personally have had to try a mixed bag of many combinations of perscriptions. EDS pain is not just chronic pain, its acute chronic pain that worsens with age.
There is no reason in the world to allow a teenage girl to have to deal with OTC meds and pain now and cry at the end of her every day, when she’ll have worse for the rest of her life. Every time a joint slips out in bed, it creates microtears in the facia. They don’t get better. Allow this teen girl to enjoy her teen years without pain or setting her up for an ulcer. She’ll have time enough to be in pain later.
From the NIH gene reviews (Author do your HOMEWORK):
http://www.ncbi.nlm.nih.gov/books/NBK1279/