Tips For Staying Motivated With A Chronic Disease Like XLH
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Tips for Staying Motivated With a Chronic Disease Like XLH

When you’re living with a rare and progressive disorder like X-linked hypophosphatemia (XLH), with its myriad of potential symptoms, you may find it difficult to stay motivated. Here are some tips that may help spur you on.

 

Stick to When You’re Most Productive

To have a productive day, you should try to follow your personal body clock. You don’t want to set yourself up for failure by trying to accomplish a task when you don’t have the energy. There may be times during the day or night when your symptoms are more manageable. You know your body better than anyone, and sticking to your body clock can help you stay motivated.

 

May 15, 2020
Patient Shares Experience With X-Linked Hypophosphatemia As Part Of The Patient Seminar Series
People

Patient Shares Experience With X-Linked Hypophosphatemia as Part of the Patient Seminar Series

X-linked hypophosphatemia (XLH) is a disease so rare that 90 percent of dentists will never see a patient who has the disease. But on October 4, 2019, about 75 members of the GSDM community were able to learn more about the disease from the patient perspective when Gin Jones, who suffers from the disease, shared her experiences.

Jones’ presentation was the third in the Patient Seminar Series, an ongoing event where patients, family members and legislative advocates share their knowledge of rare diseases, helping to “put a face” on oral-related diseases not often encountered.

Dr. Yoshiyuki Mochida, clinical associate professor in the department of Molecular and Cell Biology organized the series, which he said aims to spread awareness about disorders not commonly taught in the classroom.

 

Feb 6, 2020

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