Patient Stories

X-linked hypophosphataemia (XLH) is a lifelong condition that can affect children and adults differently, with symptoms that vary from person to person. Click on the patient stories below to learn more about how XLH can impact on an individual: how the condition can affect them physically, psychologically, and emotionally, as well as the impact it can have on their families.

Taiwan XLH Patient

Patient started having symptoms at the age of 1 and was diagnosed about 1-2 years ago when his parents was advised to pay special attention to the symptoms he was facing.

Cameron’s Story

Cameron was diagnosed with XLH at the age of 3, despite his mother searching for answers to his symptoms since he was 1.

Jack & Mikey’s Story

For brothers Jack and Mikey, X-linked hypophosphataemia (XLH) has been character-defining. With constant support from their mother combined with their own unique strengths, they have faced considerable challenges from early ages. Still in their teens, they offer wise words of encouragement and hope to others with the condition.

Georgia’s Story

Being familiar with the genetics of X-linked hypophosphataemia (XLH), Royce and Angela knew that Royce’s XLH would be passed on to any daughter they may have. Whilst Georgia’s XLH diagnosis was initially confronting, they have faced it with enormous courage, determination, and unwavering care.

Sue’s Story

Sue’s story is one of extraordinary resilience. It spans the recent history of XLH from the days when it was referred to as Vitamin D-resistant rickets through to the present when there is hope that her granddaughter, also affected by XLH, will live life as if there wasn’t anything wrong at all.

Naomi’s Story

Despite receiving standard treatment options available at the time, Naomi suffered from numerous effects of X-linked hypophosphataemia (XLH) from a very early age. Her dream is that new therapies will be developed that allow children to live normal lives free from the trauma she endured.

Royce’s Story

Royce has remained remarkably optimistic and strong despite the difficulties XLH has thrown at him. He is now focussed on supporting his wife Angela as they navigate through the challenges faced by their young daughter Georgia, who is also affected by XLH.

Angie’s Story

In spite of the significant health challenges Angie has faced because of XLH, she feels “blessed” in a number of ways. These include relishing the joys of being an aunt and embracing the fact that she has a condition which makes her unique.

Smile for hope patient’s story

Being the bridge between patients and Healthcare Professionals (HCP) to achieve better patient outcomes, we develop partnership, education, and advocacy to support patient advocates and communities to make a meaningful difference in patients’ and caregivers’ lives and helping patients smile.

Georgia's story

Coming soon

Jack & Mikey's story