This week, we've got a commentary from the parent of a spontaneous XLHer, who's dealing with chronic pain against the backdrop of negative press about opiates. Here's what the parent had to say:
Did you know that when it comes to pain treatment some professionals do not recognize XLH as a disease that can cause chronic pain? Our family has discovered this first-hand in our XLH treatment journey. A number of well-meaning professionals, friends, and acquaintances have made suggestions for how my XLH child might find some relief (anti-inflammatories, bee-venom studies, Epsom salt baths—we have tried them all). Steroids worked great for a while, but when her kidneys started to shut down, new treatment had to be considered. Unfortunately, only opioids worked well enough for her to work and live with a certain amount of independence and pay for insurance that doesn’t cover any of the costs of this medical problem. The world of opiates, however, has been a tough world to navigate—a world made even tougher by the rarity of XLH.
Recently, a pharmacist refused to refill an opioid prescription because he didn't “think the level of pain medicines prescribed were necessary.” This prescription was put on hold, not filled, and it could not be transferred to another pharmacy. We have begun to feel like we are collateral damage in our society’s misguided but well-intentioned attempts to fight a war on prescription drug use.
My child is not collateral damage; and no one’s should be. In an attempt to advocate for my daughter and others with severe pain related to XLH, I have researched various foundations dedicated to raising awareness for pain management. I am volunteering with The XLH Network, Inc. to make this problem more well known, and we are hoping to recruit a pain management specialist to the SAB and to create partnerships with other organizations that might benefit members in similar situations. There are no magic solutions to easing my daughter’s pain, but I am dedicated to making sure that those of us in this community who struggle with chronic pain have some pathways to answers.
It has been a long and lonely road so far, so I hope others know that we do not have to travel it alone.
For more information on chronic pain, see the NIH (https://nccih.nih.gov/health/pain/chronic.htm).
For more information on advocacy for patients with chronic pain, see the U.S. Pain Foundation (www.uspainfoundation.org).