Sunday, August 3, 2008

Newspaper coverage

I have to take a step back and tell you about the newspaper story that ran on Friday, July 25 (the day before the big sale). We were interviewed, along with the family of Kendyl, the other girl in Mielle's school that has JDM (in remission). We were expecting a little paragraph of a story, so we were very surprised and happy to see quite an in-depth article - and they mentioned contact information for Cure JM, which is fantastic. When we were planning the yard sale, I wasn't expecting the actual sale to be that big (how wrong I was!) but I thought it would be a great vehicle to get media coverage and raise awareness about JDM - and it worked! Here is a link:

I'm not sure how long the story will stay on the paper's website, so I'm going to copy and paste the text at the end of this post.

Anyhow, we followed up with both papers and got post-event coverage as well, also mentioning the Cure JM website.

I'm getting a lot of satisfaction out of this. Here's the text of the first, longer story from the Alameda Journal:

Like many mothers, Suzy Clement is proud of her daughter, Mielle Gonzalez. Mielle is bright, aware and articulate. But unlike other mothers, Clement is grateful when Mielle has the strength to briefly ride her bike or walk up stairs on her own. She never knows if her daughter, who suffers from Juvenile Myositis, will be able to do these things in the future.

Juvenile Myositis (JM) is a rare autoimmune disease whose main symptoms are muscle weakness and skin rashes. JM occurs when the immune system mobilizes against a "trigger" (which could be a virus, vaccine or environmental hazard) but is then unable to stop the infection-fighting process, creating damage to the body.

Other symptoms include inflammation in the digestive system; fever; calcinosis, which are small lumps of calcium that form under the skin or in the muscle; and vasculitic ulcers, which are holes in the tissue that surrounds an inflamed blood vessel.

JM affects only about 5,000 children in the United States. Yet there are two known cases in Alameda.

Michelle San Nicolas clearly remembers the first time she noticed symptoms in her daughter, Kendyl. At almost 4 years old, Kendyl woke up one morning with rosy cheeks, resembling a rash. San Nicolas thought it might be a reaction to a new laundry detergent. But switching back didn't help Kendyl.

When she took her son to see a dermatologist for eczema, she asked the doctor also to look at Kendyl. The doctor speculated it might be a reaction to too much sun exposure. He put her on

cortisone and advised staying out of the sun. Although San Nicolas followed this advice, there was no improvement. Kendyl's cheeks turned a bright red, and she developed foot pain. She also became more tired, and all her cuticles became painful and seemed to be infected.

San Nicolas learned later that the cuticles weren't infected. Instead, the disease was causing the blood vessels to atrophy. When Kendyl's cuticles grew, they turned brown from lack of blood flow.

After another false diagnosis, San Nicolas was referred to a San Francisco specialist who confirmed JM through a blood test. It is not uncommon for doctors to misdiagnose JM sufferers since the disease is so rare that most doctors won't encounter it during their careers.

Although Kendyl had a difficult time taking her pills and dealing with medication side effects, she responded well to treatment. Now approaching her eighth birthday and another year at Franklin Elementary, Kendyl is symptom-free. Her disease is in remission, meaning she has been off medication for at least a year. San Nicolas is still cautious, however, because relapses could happen at any time.

One-third of JM sufferers will go into permanent remission, one-third will enter remission and suffer relapses and one-third will always be on medication. JM affects each patient differently. Some have mild symptoms while others might die as a result of the disease.

"I will always worry about it," says San Nicolas. "As a person who never got sick, I thought it was just a rash. But it was something terrible. Now I question everything. If she gets sick, I wonder if it will trigger (the disease). What happens when she grows up and gets pregnant; will it trigger something?"

San Nicolas was able to provide much-needed support when Suzy Clement's daughter was diagnosed with JM. Mielle, also a Franklin student, started having red blotches on her cheeks in early 2007. By fall of that year, the six-and-a-half-year-old had developed muscle weakness and soon couldn't walk far without getting tired. To walk up stairs, she had to pull on the railing or push on her legs. Her parents, Clement and Lenny Gonzalez, thought her kindergarten schedule might be wearing her out. But soon, Mielle couldn't go up stairs at all. She wasn't able to get up off the floor without crawling to a piece of furniture and using it to push herself up. Initially suspecting lupus, her doctor referred her to a pediatric rheumatologist. The diagnosis was JM.

Mielle initially responded well to treatment. But the drugs commonly used to treat JM are strong with powerful side effects. Mielle began a high dose of the corticosteroid Prednisone, which can cause mood swings, increased appetite and weight gain, altered weight distribution, bone density loss, stunted growth, high blood pressure and cataracts. She also began Methotrexate (a chemotherapy drug when used in higher doses), which can partially take the place of corticosteroids after it has had time to build up in the body.

Mielle has experienced various plateaus during the course of her treatments. She switched doctors and now goes to Stanford every week for intravenous injections of Methotrexate. She is also on Prednisone and Cyclosporine, an immuno-suppressant drug typically used in organ transplant recipients to prevent rejection of a new organ.

Although her strength has improved and she is occasionally able to ride her bike for brief periods, she still has a facial rash and signs of active disease, such as inflammation. Her weekly treatments often leave her so exhausted that she needs to sleep most of the weekend. She also deals with mood swings and anger, a side effect of the Prednisone.

"Mielle recently told me, 'My brain feels like it wants to jump out of my head and beat someone up,'" said Clement.

One problem of dealing with an uncommon disease is that treatment methods vary, and effectiveness is not guaranteed.

"There's no standard protocol of treatment," said Clement. "Every case and every kid is different. Kids don't respond to treatments the same way. So your kid starts to feel like an experiment. Your 6-year-old is taking a combination of toxic, lethal chemicals, but that's what we have to do. It's bad enough knowing your kid has this disease and she has to undergo this treatment with horrible side effects. But we don't know if it's going to work or if what we're giving her is right."

Next month, the Gonzalez family, which includes 16-month-old brother Lucien, will travel to Chicago to seek more aggressive treatment from one of the few facilities specializing in JM. Even in a best-case scenario, Mielle will be under treatment for at least two to three more years. Her medical bills are costly for self-employed photographers Clement and Gonzalez, who pay completely out-of-pocket for their medical insurance.

This Saturday, the Gonzalez family and friends will host a multi-family yard sale that includes a wide variety of items donated by community members. Proceeds will help pay for the Gonzalez family's medical bills and a portion will go toward JM research.

Items for sale include toys and other items for babies and children, furniture, clothes and bikes, and more. Friends of the family, who are musicians, will be playing for tips, and Mielle will be hosting a lemonade stand.

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