Wednesday, March 18, 2015


Today's guest post is by member Nancy J. Alauzen. She is an adult with XLH and a positive attitude. In her spare time, she loves to read and recycle.

I have had XLH since I was born over five and a half decades ago. My mom skillfully managed my XLH until my college graduation. The main thing that has helped me successfully manage my XLH has been my positive attitude, inspired by my last name, Alauzen, which is pronounced "All Is In."

Over 20 years ago I started a business and planned to be a professional speaker giving presentations on overcoming obstacles. A mentor suggested “All Is In Attitude” to capture the correct pronunciation of my last name and the way I approach life. I’ve known from an early age that the glass can be seen as 'half full' or "half empty." I have chosen to approach life with the glass "half full." This has helped tremendously with living with XLH.

Those of us who live with XLH can fill a sheet of paper (or more!) with the many challenges we have faced along  the way. Early in my XLH journey, I naively believed that having tibial osteotomies to correct the deformity of the legs was the only hurdle to overcome! 

My checklist has grown over the last 40 years to include some of the following: Tibial osteotomies and subsequent removal of the hardware; Baker Cysts; two knee replacements; modification to a knee replacement; hearing loss, DVT, parathyroidectomy, chiropractic and podiatric issues; and classic dental abnormalities for XLHers, including almost a dozen root canals, half a dozen extractions, two fixed bridges and five implants.

Your checklist may be shorter or longer but the questions remain the same. Is it easy to live with XLH? No. Is it manageable to live with XLH? Yes. How? I believe the one secret and key to successful XLH management is “All Is In Attitude.” If we see our glasses as half full, we can manage our XLH more successfully.

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