Childhood diagnosis changes life for millions every year

By Kathi Bliss

Editor/POST-REGISTER

 

Imagine watching your once-vibrant toddler deteriorate before your eyes.

Watch as your four-year-old loses muscle tone in her face, becomes too weak to walk on her own, and chokes when she tries to swallow food or juice.

Then, imagine doctors finding the reason, and learning that a disease you’ve never heard of, with no known cause or cure; a disease you know nothing about, you don’t know how to fight or even how to pronounce, is going to steal your daughter’s childhood.

Imagine the “new normal,” as you swap play dates for doctor visits, medications for snack times, and hospital stays for family vacations.

How could you ever call it a blessing?

Two Caldwell County families have done exactly that, as they grapple with the potentially devastating effects of Juvenile Dermatomyositis (JDM), an under-recognized and rarely-discussed autoimmune disease that affects between 1 and 5 million children every year.

The “Thompson*” family began their journey with JDM eight years ago, when they noticed that their youngest daughter was having more trouble walking than the average toddler. She started having trouble eating and drinking, and wasn’t able to brush her hair, or even lift her arms over her head.

Over time, the Thompsons received the diagnosis of JDM, and after the initial shock, began to use their family situation as a platform to raise awareness of JM, eventually partnering with the Cure JM Foundation to inform families about the diagnosis, and to support families and children fighting the disease.

Instead of calling the diagnosis a tragedy, they decided to make it an opportunity.

Some might say the Thompson family’s life is dictated by Abbie’s disease. They set alarms for a litany of daily medications, some which can’t be mixed, others which must be taken with food, and yet others that have to be taken on an empty stomach. They structure their days around routines of medications and sunscreens, doctor visits and test.

Still, they have built a relatively normal life. They still participate in 5K races throughout Central Texas; instead of competing, they advertise JDM, and answer questions along the way, educating spectators and other racers about Abbie’s diagnosis and the Cure JM Foundation.

They travel, just like other families; they just have to take along sunscreen and extra long-sleeved shirts and long pants, because exposure to sun can trigger autoimmune responses that aggravate Abbie’s condition.

Every four weeks, they schedule an 18-hour visit to Dell Children’s Hospital, so Abbie can receive the IVIG treatments that keep her going.

And while they pray every day for remission, they understand that this could be life… Forever.

For Abbie, though, that’s okay. A normal “tween” and accomplished photographer, she has a boundless sense of humor and a sunny attitude about the only life she’s ever known.

“I know it sounds ridiculously weird, but I absolutely love having JDM,” she wrote in an essay for a photography contest. “… There are so many places I never would have been, things I never would have done… people I never would have met. Don’t get me wrong, there is a bad side to JDM… but I still think JDM has been a blessing in disguise.”

The Cure JM Foundation hosts an annual conference in Chicago each July, in conjunction with the Chicago Half Marathon. While the Thompsons will participate in the conference as “virtual volunteers,” a team from the Cure JM Foundation will participate in the marathon to continue raising awareness of this life-altering disease, with which 1,000 American children will be diagnosed this year.

To learn more, or find out how you can help, visit www.curejm.org.

 

*At the request of the family involved, the names in this story have been changed to protect “Abbie’s” anonymity.

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2 Comments

  1. As a mom of a fellow JDMer, it is a rough life but you almost get used to the ups and downs. My daughter is now 15 and in the 10th grade. High school is hard.

  2. Donna Voetee says:

    Correction, please:

    Article states: “…autoimmune disease that affects between 1 and 5 million children every year.”

    That sounded like a whole lot of children, so checking at the link revealed this: JM is a rare disease and its exact incidence is unknown. Estimates from various studies suggest that between 1 and 5 children [[per million]] will develop this disease each year.

    That said, whether it’s 5 million children or 1 in 5 million, each child is precious and deserves the best chance for a healthy, productive life that is possible.

    Obviously, I did spend some time at the linked curejm site. How disappointing that the first thing one sees is the hand outstretched, begging for money. Money will not cure the problem and heal children, which is what we all want. Looking at all possible causes is the only way to find answers, as uncomfortable as that may be in some cases.

    My own son at 17 had “Idiopathic Severe Aplastic Anemia” for which he had a bone marrow transplant at age 19. With intervention with foods and nutrients, he sailed through it, to the amazement of doctors and even the nurses who came to me on the side asking “What did you do?” They did not see people going through the process without mouth sores, people who did not lose weight, people who were able to go into the sun, did not have dry eyes or gut-wrenching diarrhea, or any other signs of Graft vs. Host Disease. The secret, I said, was giving the body what it needed to heal. For instance, the same immunoglobulins found in the very expensive IVIg are in colostrum and whey, natural foods readily available in any health food store.

    As in my son’s case, it was an easy ‘out’ to slap an “idiopathic” label on it. Doctors did not want to hear that he had been exposed to benzene in Goof-Off for six months prior to diagnosis. They did not want to test him for mycoplasma infection that tags along with childhood vaccines. They were not interested in the fact that we lived in an agricultural area where pesticides were often air-borne, and jets flying into Ontario Airport dumped their fuel along the way, and there were hot spots of other cancers in the area. I took him to an alternative-minded MD who tested him for metabolites of aromatic volatile organic compounds. Results? He was off the chart in several of them. (Besides Goof-Off, this chemical and its VOC cousins are often found in perfumes and colognes, even the expensive ones, and the FDA does not require labeling of the proprietary ingredients.)

    It may be uncomfortable, as I said, to consider that your child is suffering due to something other than being the lucky one that XYZ disease targeted. All vaccines carry viruses that can incite auto-immunity. Sometimes there are “hot lots” that affect many children; search your child’s immunization record for lot numbers and check with the CDC for similar reactions to that lot. Don’t expect them to necessarily all be in your area; vaccines lots are disseminated widely for this very reason. I expect vaccine injury of my son’s immune system, even though it was 12 years after his last shot. Looking at the stats for DM, both children and adults in the 40-50 range, mostly women, are affected. This is a red flag for the Stealth Virus that was discovered in the polio shots that children got 1955-1962, and which has led to an epidemic of a/i disorders like Chronic Fatigue, Fibromyalgia, and Lupus in women who are now in that age range. We all know someone with those, don’t we?

    Consider that there are nutritional factors that doctors will not look at. Magnesium, iodine, and glutathione are critical for optimal health, yet universally deficient. There are environmental factors. Lockhart has its own specific dangers, with thousands of chemicals, particles, and gases from woodsmoke; molds going airborne from grain being milled; mattress chemicals being fanned out into the air; and defoliants on cotton crops, among others.

    There is no reason we should be expected to “get used to the ups and downs.” No one is promised a bed of roses, but at 15 or even younger, life should not be hard, but full of joy, health, expectations, and hope.

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