Monday, March 19, 2018

Parenting adolescents with a chronic illness

Parenting adolescents or teens can be a roller-coaster for all of us. Parenting an adolescent with a chronic illness has its own set of challenges. Developmentally, your child’s job during this time is to develop their own identity and work toward independence. But when a child with XLH is naturally more dependent on you than their peers for things like medication routines, doctors' appointments, etc., it can create additional anxiety and stress and exacerbate any feelings of being "different." And we all know how an adolescent's stress levels can affect the family dynamic.

So how can you still monitor your child’s medical care and help them gain independence at the same time? Research suggests that allowing children increasingly more responsibility for their own care can help. Letting them have some time with their medical team alone, giving them the responsibility for taking their own meds, encouraging them to find social support among their affected and non-affected peers are just some of the ways an adolescent can take control of their own health and start to feel independent.

We’d love to hear other ideas from parents. What has worked/not worked in your family?

For more information: "Developmental Complications in Chronic Illness"

Saturday, March 17, 2018

In memoriam: Mary Ruppe, MD

The Network is sad to announce the passing of Dr. Mary Ruppe, who treated many children and adults with XLH. Please join us in offering condolences to her family, colleagues and patients.

Dr. Ruppe was affiliated with the Houston Shriners Hospital for Children and the Houston Methodist Hospital, and was well-known for her XLH expertise. She undertook XLH research and wrote or co-write several scientific articles about XLH, including the entry on XLH in Gene Reviews, an online publication of the National Center for Biotechnology Information (part of the National Institutes of Health).

In addition to being a brilliant professional, Dr. Ruppe was also a compassionate clinician, beloved of her patients.

If  you never had the chance to meet Dr. Ruppe personally, you can see a bit of why we all admired her so much by viewing her video from Texas XLH Day in 2016:

Wednesday, March 7, 2018

Physical therapy videos

Have you ever had to try to explain to a physical therapist that there are some exercises you just can't do, no matter how hard you try, because your bones and muscles simply won't move that way?

We've got some instructional videos from a physical therapist who has worked with XLH patients before. Dr. Keith Steigbigl, PT, DPT, CSC, did a workshop on physical therapy for the 2017 XLH Day, and since that workshop wasn't recorded, he graciously arranged to record his recommended exercises separately, so everyone who couldn't attend the event can benefit from his advice. We're grateful to him and to Melissa Templeton, a student at Quinnipiac University's Frank Netter School of Medicine, who performed the exercises.

You can see all four videos at our youtube channel:

As always, be sure to check with your health care provider before starting an exercise program!

Monday, March 5, 2018

Hole in the Wall Gang Camp

The Hole in the Wall Gang camp in Ashford, Connecticut, in collaboration with the National Organization for Rare Disorders is holding a spring weekend for families dealing with rare disorders, May 31 to June 3. It's free, and the activities include fishing, campfires, arts and crafts, as well as opportunities for parents to chat with others in similar circumstances.

If you live in the northeast and your family would be interested, you can apply here: