This Rare Disease Day and My Daughter

The doctor, to my surprise, almost immediately said we could reduce my daughter’s med doses in the morning and the evening.

“She looks great,” she said Monday.

These words periodically come from the lips of L’il Diva’s specialist, but almost always with a condition or clarification later.

This time would be no different.

While Li’l Diva’s skin looks great, her nail folds improved, her blood tests normal, and her strength and flexibility numbers perfect, further examination led to the discovery of a small reddened patch on the palette of her mouth.

Inflamed blood vessels. The telltale of this autoimmune disease.

“It’s something no one would know about unless they really looked for it,”  the doctor said. “It means there is still disease activity.”

The twice-a-day reduction would be cut to once-a-day, still a step forward, but a tinier one on the long journey to a remission we have never even caught a fleeting glace in 12 years.

Twelve years of pumping one toxin or another into our little girl’s system in hope that it will reboot her immune system properly. The years, the meds, the doctor’s appointment, the blood draws … they run together like so many tears, shed and silent.

“She just may be one of those children whose going to need to be on some form of medication all her life, at least until we find a better medication that does the whole job,” her doctor said.

A better med. A proven cure.

Those will come when the drug companies and the scientific community make curing rare diseases, like the juvenile myositis Li’l Diva has, more of a priority of life and death than a profit-margin decision. It will come when everyone understands that a disease so statically insignificant isn’t so when it invades the flesh and blood of your child.

This Rare Disease Day, let’s join together for better care for everyone.

Note: To mark this day, I also updated a previous post I wrote about our struggle to find a diagnosis for Li’l Diva and ran it on the NYC Dads Group blog. Please give it a read and share it if you can. Thanks.