6-year-old Annalise Algeo battles rare auto-immune diseasePublished May 1, 2013 at 11:36 am (Updated May 1, 2013 at 11:36 am)
The Algeo family
Annalise Algeo suffers from a very rare auto-immune disease called juvenile dermatomyositis.
Annalise Algeo is a typical kindergarten student at Bower Hill Elementary School in the Peters Township School District who loves to learn and to play with her classmates. Entering first grade in the fall is eagerly anticipated.
But for Annalise, who just turned 6 years old, life is a little more complicated than for most her age.
On Dec. 7, 2010, Annalise was diagnosed with an extremely rare auto-immune disease known as juvenile dermatomyositis, or JM for short.
The family, including mom Jacqueline, dad Drew and her older brother and younger sister, took a vacation to Florida in 2010.
“We looked at pictures from the vacation and her face was bright red, and so were her cheeks,” Jacqueline said of her daughter. “We thought she got sun poisoning.”
The burn resembled a butterfly rash across her face. Lupus, with similar markings, was ruled out even though she initially tested positive for the disease. Additional testing at Childrens’ Hospital in Pittsburgh determined it was JM. There is no cure and, at the highest level, the disease can be fatal.
JM affects every muscle in Annalise’s body, including her heart and the muscles in her legs.
Before a definitive diagnosis, she developed rashes in the summer on her elbows and knees. In the fall, the rash appeared on her hands, knuckles, toes and ankles.
“In dance class, she collapsed on the floor and had to be carried everywhere,” her mother said.
Because JM is so rare, Annalise was subjected to numerous blood tests and she remains frightened of needles.
“It hurt in the beginning, mainly her legs. She was 3 at the time and she couldn’t get in the car by herself and asked to be carried,” Jacqueline said.
JM falls in three levels of severity: high, which may result in death, middle and low, the level at which Annalise is diagnosed, her mother said.
But even the lowest level is difficult for one so young.
Since there is no cure, physicians gave Annalise high doses of steroids.
“That blew her up,” her mother said. “Then a low dose of a chemotherapy drug by injection once a week, and then two medications to counteract the effects of the chemotherapy.”
Her hair fell out. That round of medication was followed by more chemotherapy and more oral medications and injections. Healthy donor blood cells were injected in an attempt to trick her blood cells into thinking she was healthy.
“That was her turnaround,” her mother said of the healthy blood cells.
In addition, she has eczema that appears in the fall and spring. The original rashes from JM were itchy when they first appeared, “and they looked red and kind of irritated,” Jacqueline said.
Now, the original JM rash is completely gone and the disease is dormant. However, her skin will stay that way only if she protects herself from the sun.
“The sun was her trigger,” Jacqueline said. “In the beginning, she had a hard time with (the disease) and she knows there is no cure, and for her to stay (rash free) she has to protect herself from the sun.”
Even though physicians know little about JM as it is so rare, it is highly unusual for siblings to have the disease, with the exception of twins.
Jacqueline has already met with the principal and nurse at Bower Hill and each knows that Annalise must always be protected from the sun. The family has provided sunblock and a hat.
“She can go out for little periods of time,” her mother said. “She won’t miss recess.”
Annalise is to keep away from children and classmates who have recently been vaccinated with a live virus, such as those who receive the flu mist.
“She has not had her MMR, measles, mumps and rubella, as we had to delay it, and that’s hard for the school. If the flu is going around, she gets sick and it takes her longer to get better,” Jacqueline said.
The Algeo family learned more about JM through the foundation’s Facebook page.
“Before, we never knew anyone who had it,” she said.
There is an annual conference where affected families can learn more about the disease from the two major physicians involved in research. The Algeo family will attend this year’s conference in Chicago. Because JM is considered an orphan disease, no major pharmaceutical companies dedicate money for research. More than 95 percent of money raised by the JM Foundation members goes directly for research.
This summer, Jacqueline Algeo said the conference will feature a half-marathon and the Algeo family will set up lemonade stands at their house and during local yard sales.
To learn more about JM, visit www.cureJM.org. To donate to Team Annalise at the half-marathon, visit curejm.donorpages.com/ChicagoHalfMarathon/JacquelineAlgeo.