XLH weakens my bones, but not my will!

Katany85_rare bone disease

katany85's Story


Age: 25-36

A little bit about my journey:

My Diagnosis


Time to Get Diagnosed

10 years

Year I was Diagnosed


Sending Love to

Dr. med. Lothar Seefried, cause he was the first doctor who listened to me

Hospital I'd Recommend

König-Ludwig-Haus Würzburg

This is my story:

I was born with X-Linked Hypophosphatemia (XLH), it is a rare genetic disorder that affects about one in 25,000 people. I am one of them. I have a low level of phosphorus in the blood (Hypophosphatemia). This causes a wide range of symptoms and disorders that affect my bones, teeth, muscles and my mental health. My bones are so weak that i already had 3 broken bones. One of them took place in my thoracic vertebra, which causes severe pain. I am in pain everywhere, at all times. My body is usually stiff like a milk ice cream. If you have to live with daily pain it is important to have good pain therapy. It is not easy to get this with such a rare disease. It can quickly happen that you develop depression because of the pain and the helplessness. I was in very poor mental health until I finally found a doctor who listened to me, understood me and knew about my disorder and and their impact. I have been looking for a doctor who can help me for over 20 years. Now I can finally start to be mentally healthier, with all the therapies I can take. Despite daily pain and a lot of restrictions in my life, I am happy and satisfied that my illness did not manage to defeat me. I keep fighting every day. This year I even got in touch with a worldwide community with people who have XLH themselves, thanks to the internet. I am grateful for each of them and I made friends with people on the other side of the world. Finally I start to live, my bones are weak but not my will, anymore. Jana <3

Let’s play 20 questions:

The song that keeps me going is:
Primavera, Ludovico Einaudi
I never leave home without my:
My go-to feel better movie is: 
The Shack
If I was in the hospital, the celebrity I would most love to visit me would be:
Alex Høgh Andersen
When I need to relax, I:
paint because I am an art fan or go to the forest and meditate or read a book.
My favorite food is:
The quote that keeps me going is:
When I need a laugh, I:
call my friend
Meet my pets (or favorite stuffed animal):
Fussel (fluff), my Siamese cat
My hero is:
is my physiotherapist Kati
When I’m having a down day I binge watch:
Vikings, no one is stronger than Ivar the boneless
My favorite book to get lost in is:
The Mirror Visitor (die Spiegelreisende)
I want to be best friends with:
Jonna Jinton, she has a soul of gold
The thing I’m most proud of:
myself and that I made it this far
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
I was given the chance to travel to my favorite island. those were the most beautiful days in my life. I can't count how many times I cried because of this beautiful nature
The most hilarious thing that has happened to me is:
It really means a lot when someone does this:
when someone is attentive and dares to approach me
My favorite social media account to follow is:
The advice I would give to myself back at the beginning of this journey would be:
don't give up and keep the good things in your head and forget the bad ones
Words of encouragement that I’d give to my fellow warriors are
you are enough, you just have to be the person you are
Follow my journey: https://www.instagram.com/katany85/

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