Ronja’s Colour » International XLH Alliance

Rare Disease Day 2021

At what age were you diagnosed with XLH?

18 months

How old are you and what is your biggest challenge in living with XLH?

I am 28. So far, the biggest challenge has been the time I have been waiting for the result of my daughter’s XLH gene test.

What do you enjoy most in life?

Watching my daughter grow up and accompanying her as she discovers the world and continues to develop great.

I have long thought about what I could share with you. At first I was unsure what you would be interested in, whether it had to be something spectacular.At first I thought I would share with you my volunteer work for people with XLH and phosphate diabetes and tell you how fulfilling it is.But then something else occurred to me. Something that may be quite mindless to some people. I am a mother and a health care worker.I don't take either of those things for granted.I am truly blessed with my daughter. But I also realize that some things don't come as easily to me as they do to other mothers. Although I am only 28 years old, I am not able to carry my daughter down the stairs in the morning. Simply because my ankles hurt so much, especially after I get up. In the beginning, this was especially hard for me. On the one hand, pregnancy and childbirth taught me what miracles my body can accomplish. On the other hand, I have difficulty carrying my daughter. Sometimes I also think that XLH gives me a higher base load than other mamas. But that may just feel that way -in the end, I'm sure everyone has their baggage to carry.My profession is a health care worker, which used to be called a "nurse." I am completely absorbed in this profession. It fulfills me and I am good at what I do. For me, there was always no question that I would do this job. I didn't think about the physical strain for a long time. For a long time it didn't occur to me that this profession could bring me to my physical limits. This awareness crept in only gradually. And this is where I come to dogmatism: Wouldn't the logical conclusion be that I should choose another profession? No. Thatwould be dogmatic. There are areas that are not so physically stressful and demanding, such as the physical care of other people. I work in psychiatry. So I'm still working in my dream job. And thanks to the things I was given along my life's path, I workin a field that is so close to my heart. The psychiatric care of people. That's exactly what I'm good at. Maybe without XLH I would never have ended up there?!

Ronja

Who or what makes you laugh?

Black humour and sarcasm. My husband is pretty good at both and manages to make me laugh every single day.

Who is your role model?

My grandfather. He has a really impressive life path. And he is not only insanely intelligent, but possesses a form of wisdom that I have rarely experienced like this. He is kind and compassionate, but at the same time lovingly strict and demanding.

What do you do to relax?

Sewing. I can be creative, but on the other hand I have to stick exactly to certain guidelines. That helps me a lot to relax and get out of ruminations. Yoga is also good for me and reminds me of what my body can do.

Are you receiving professional, medical treatment?

Yes, but not in all areas where it would be necessary.

Are you particularly afraid of something?

I have two big fears about XLH.Firstly, I am always worried about my teeth and getting infections or losing them.The other is that my pain and wear and tear on my joints will continue to get worse and I will lose more and more mobility as a result. I’m afraid that this will further limit my life or maybe even lead to me no longer being able to do my job.

What do you do when you feel bad?

Brooding. And when I’m ready, seek a conversation with a person I trust. But withdrawing and taking care of myself can also help me.

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

I have never had an operation in my life. Neither for XLH nor for anything else. I was lucky enough to have my deformities corrected for the most part with the help of consistent medication.

What did you have to learn in your life with XLH?

That accepting help is not a bad thing. Neither is asking for help.

What advice would you give to others in your life?

I find it difficult to give advice. Especially general advice. Isn’t there a saying that goes “advice is also a blow”?!But if I had to try to give something to someone in general, it would be this:Believe in your dreams and work for them to come true. But don’t get dogmatically bogged down in them. If a dream seems unattainable, think about what you can do to achieve it. Sometimes you might have to adapt your dream a little to be able to live it.