The Fellowship Event of Patient Group

2018 The fellowship event of X-linked hypophosphatemic rickets’ patients

The fellowship event of X-linked Hypophosphatemic Rickets’ patients has been organized from the year 2014. Since then, experts such as physiotherapists, dentists etc. were invited to share their fields of knowledge and experiences. Different kinds of activities also are held, hoping to release patients’ pressure.

On Saturday, April 28, 2018, five patients and eleven family members took part in the social activity, in which Dr. Liu from the orthopedics of  Makay Memorial Hospital was invited to introduce the history and some foreign cases of X-linked Hypophosphatemic Rickets. Dr. Liu mentioned quite a few came to the examination room because of the O-shaped legs, but to diagnose if they do suffer from rickets, it is of great importance to understand the transformation process in detail. For patients, they are really concerned about the opportune time of surgery, and from Dr. Liu’s professional viewpoint, he considered that whether a surgery is needed basically depends on outer appearance and pain degree, but the comfort and progress of patients, however, should be given a top priority.

After the speech, the patients communicated with each other passionately. Although the participants are low in number, they were from different age groups: one patient underwent several times of operations due to early misdiagnosis; one took medication under the assistance of TFRD; one underwent surgery and is now attending university; one, an elementary student, is going through the surgical process and wearing corrective footwear, uncertain of the treatment. There was an extensive as well as a multi-faceted discussion as a result of the discrepancy among patients.

In the afternoon, the stress-relieving activity was held in the baking classroom.  Because most of the patients had cooking experiences, they took on a more challenging mission– making pound cake. The tasks, including weighing the ingredients, stirring egg yolks, and kneading the dough into mold, were all carried out by themselves. Everyone was beaming when they saw the cake was getting colored as the temperature of the oven rose. The cake was fresh from oven, signaling the end of the activity. Finally, they took a group photo in a pleasant atmosphere, with beautiful memories left in their heart.

Translator: William Luo (MPS), Reviewer: Nicky