Sunindiya’s Colour » International XLH Alliance

Rare Disease Day 2021

At what age were you diagnosed with XLH?

When I was 16 months old. I am a spontaneous case so no one in my family has the disease

Seeing how easily my physical health is impacted by my XLH, I have come to the decision that I do not want to get pregnant. I am not afraid of raising a child with XLH, especially with the advances in medical science, and because I see how special people living with XLH are. However, I am worried about how my own body will be impacted given how easily the smallest thing, like falling, can have a big impact on my body. However, I have always wanted to be a mom. So, I have decided to adopt a baby and hope to start working on the process over the next year!

Growing up, I never knew a single person with XLH. When I turned 30, I had a big hip preservation surgery. At that time, I decided I needed to find a community for support and information. So, my doctor connected me with The XLH Network, Inc. The next year, I went to their annual XLH Day and I was amazed – to walk into a room full of people who looked like me, who felt like me, and who knew exactly what I was going through. Since then, I have made two of my closest friends from the people I have met because of my XLH.

Sunindiya

What do you enjoy most in life?

I enjoy being able to actively contribute to the XLH community, both in my own country and internationally. Only in the past few years have I really become comfortable in sharing my story and advocating for/uniting others living with XLH, taking more of a leadership role in The XLH Network, Inc. and the International XLH Alliance.

Who or what makes you laugh?

The TV show FRIENDS has always been my go-to when I need a distraction or a laugh – when I can’t sleep at night when I’m in pain, or feeling down about something.

Who is your role model?

My mom is my role model. She is a strong woman who has overcome a lot. She doesn’t worry about what people think of her. She is compassionate and kind. She is hard working. She doesn’t complain. And, she has taught me how to be a fierce advocate for myself and others.

What do you do to relax?

I love to read, swim in the ocean, and do my nails!

What advice would you give to others in your life?

To embrace every aspect of who you are, because it is what makes you unique! To fight for care and treatment, for your body and your health because you know it best.

Are you receiving professional, medical treatment?

Yes, I am on Burosumab/Crysvita treatment. Throughout my childhood I was on k-phos and calcitriol. I also see a rhematologist, endocrinologist, neurologist, orthopedic surgeon, and now recently a nephrologist all to manage my XLH.

Are you particularly afraid of something?

What do you do when you feel sad?

When I’m physically feeling bad, I always use heat. I am never far from a heating pad, hot water bottle, or heat wrap when I am relaxing at home – whether on the sofa or at night in bed. When I am emotionally feeling down.

Have you had any operations because of your XLH and if so, how many?

Yes quite a few! 7 so far and I know there will be more to come. #8 is planned for 22 Feb 2021. Most of my surgeries were on my femur bones and hips but I also had a neurosurgery when I was 12 to correct a chiari malformation.

What has living with XLH taught you?

One of the biggest challenges for me in living with XLH has been that my XLH is not very visible, and between that and being a spontaneous case, not many people understand what I am going through and how I am feeling. I have always tried to hide it and did not want my XLH to define me, but it is a big part of who I am and I am learning to be open about it because it has shaped who I am as a person – my perseverance, my compassion, and other qualities I bring to my work and life. I had to learn to own my story and be proud of who I am, and embrace my differences and uniqueness. I was bullied as a child because of my disease, and I have always felt judged and different and “less than” because I am not perfect, especially being Indian and in an ethnic community where there is a lot of judgement. But I’ve also learned to recognized the positive ways my XLH has shaped who I am, such as leading me to do the work I do in my career to advocate for and support vulnerable populations who are often misjudged and overlooked.