Resilience & Adaptability

Lynda Dumont, born in La Tuque, Quebec and was raised in a small northern Ontario community called Wawa. Lynda has two children of her own (both with XLH), three grandsons, one with XLH, and gained a stepson when she married her partner Carol Nisbet in 2017. Lynda works as a RECE (Registered Early Childhood Educator) for London’s Children Connection, in London Ontario. “I am fortunate to say that after working over 25 years in the field, I still am passionate and love what I do. I love that I play a direct part in the growth and development of the children I work with and it is incredibly rewarding and satisfying. My hobbies are baking and spending time with Family and Friends”.

Lynda is the oldest of three, with two younger brothers. She is a spontaneous case, with no other family members diagnosed with XLH. Though Lynda was different from her siblings in some ways, her parents never treated her any differently though she was the only girl, and perhaps a little more spoiled than her brothers!

Lynda was diagnosed around the age of 4, resulting in her first surgery at the age of 5. The doctors decided to do a full osteotomy on both legs, leaving her in a body cast for months, with the challenge of not understanding, coming from a francophone family. For months Lynda was without her family in Sault Ste Marie, living at the hospital, the only time she saw her loved ones was when the weather permitted on weekends as her family lived 350km away.

Unfortunately they ended up needing to repeat the osteotomies when she was 13 years old, resulting in her needing to repeat a grade at school due to the lengthy recovery. At the age of 12 she needed to have the pins all removed as they were aggravating her tibia. Lynda has never been treated with medicine, and finds her bones struggle to heal following her operations. In 2010 and 2013 she had a HTO (High Tibial Osteotomy) in both legs, and ended up being off for 7 months, whereas a patient without XLH would have been back to work in 12 weeks.

Lynda’s kids were both diagnosed with XLH around the age of 2, treated with Phosphate and Calcitriol throughout their childhood and adolescence, however her daughter hasn’t required corrective surgery like her son has, who seems to have a more severe case. When her son was in his late teens he required work on both legs.

Like many others with XLH, Lynda finds she has a high pain tolerance, having always endured pain from day to day. “Growing up with XLH and dealing with a high level of pain becomes normal. So much so that we tend to downplay and fail to recognize the extent of our pain. I’ve always been a strong, independent person who has had a positive outlook. Lately dealing with increasing chronic pain on a daily basis has been a challenge. Some of the symptoms that I deal with are bone pain, joint pain and stiffness, dental abscesses, fatigue and muscle weakness, lack of mobility”.

Lynda is so grateful for Carol who has been her greatest supporter and advocate, and since joining the XLH Canada support group, they feel fortunate to have finally met others who have XLH. “It can feel very isolating to not know anyone who understands your experience. This group allows me to connect with people who understand my experience. The support and sharing of information has been so validating and helpful. As a group we will hopefully connect with others who have XLH. We will support each other and fight together to make the treatment for XLH accessible for everyone. Growing up with XLH being my norm, I never talked about my pain. It was an invisible disease at times. I’ve always been resilient but connecting with others who know exactly how I feel has helped me recognize the ways in which I internalized my experience. XLH was just something I “had” but didn’t discuss. I now have people who understand and validate my experience. I feel an immediate connection to this group. It’s the community that I didn’t know I was missing. My wish is that Burosumab becomes available to everyone with XLH. We have heard the benefits from other countries, and I hope we will be able to benefit from it here too. It needs to be fully covered by drug companies. It will save health care dollars in the long run if we are treated as soon as possible to hopefully avoid all the side effects we each experience. I’m pleased to say I am volunteering for a disease monitoring study of XLH. Unfortunately this study does not provide access to Burosumab but it will provide valuable Information about varied experiences of individuals with XLH through the life span. I was fortunate to be accepted under “compassionate care” and started my Burosumab injections in February 2020. This medication reduces phosphate wasting and allows my bones to heal. Burosumab also helps with muscle weakness and energy production in the body. My phosphate levels are finally at a normal range. At the beginning my injections were given monthly but after 6 months it was decided that bi-weekly would be more beneficial. Burosumab has helped with my bone pain and muscle weakness. Joint pain and stiffness has been reduced significantly. I have been able to continue working full time and am currently on a medical leave recovering from a total knee replacement. My surgery was on June 13th and I have recovered well. I’m looking forward to returning to work as soon as possible. Before burosumab I wasn’t even sure I’d recover from a knee replacement and couldn’t find a doctor who would agree to do it. I’m looking forward to my next knee replacement with much less trepidation and I will continue to help advocate for others to receive this life altering medication.”

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