Explaining about life with XLH

Labor Day in the United States is dedicated to the achievements of American workers, but it's often celebrated with family and friends as opposed to co-workers. 

If you live in the United States, odds are you had a barbecue or other get-together this past weekend. If so, you may have experienced either the loving support or the bewildered confusion of your family/friends with respect to XLH. 

Even if you have a supportive community, you may still be reluctant to talk too much about XLH for fear of coming across too negatively. And if you're surrounded by a less supportive community, you may struggle to make them fully understand the complicated medical explanations for your lived experience. Or sometimes it's just too exhausting to keep all the terminology straight, so it's easier to just brush off any questions. (Seriously -- who but a scientist or an XLH patient would ever imagine that calcitriol refers to a hormone made out of vitamin D and not to anything related to calcium?) 

Whatever your circumstances, if there are people around you who want to know more about XLH, who want to discuss how best they can be supportive, or who want to see the proof of what you describe as XLH symptoms/treatment -- we've got a suggestion: send them to our forum. 

Some of the information at the forum is open to the general public, other sections are open to family/friends, and others (the most personal discussions) are limited to those most directly affected (patients and the parents of minor patients). We encourage extended family members and friends to join, so they can read the FAQs about the condition and get links to news and journal articles. Doctors and other health care professionals are encouraged to join as well.

So, the next time someone asks how they can learn more about your XLH or insists that XLH is just for kids, send them our way. The forum will set them straight!

First Rare Disease Summer Camp

The National Organization for Rare Disorders (NORD) is working with the Hole in the Wall Gang Camp (http://www.holeinthewallgang.org/) to host a special Summer Family Camp for rare disorders for a long weekend, from June 2 to 5.

The event is free of charge for twenty-five families who reside in the northeast United States (the camp is in Connecticut). To be eligible for consideration, you must submit an application that includes medical consent forms for each family member who will attend, and a medical exam form relating to the child with a rare disorder, to be completed by the family's own medical provider.

Applications are due by April 1 (but don't wait; there are limited slots!). The application is available here:  http://rarediseases.org/event/first-ever-rare-disease-summer-family-camp/