About 20 years ago my husband (who has OI) and I attended a meeting of the German OI association. There we met Ute Wallentin, the former OIFE president. She began to talk enthusiastically about the OIFE. And this story touched me so much that I spontaneously offered to support Ute in her work.

The task was about a young OI woman who lived on a remote island in Indonesia. She was accepted for training in the capital of Indonesia. Unfortunately, she needed a wheelchair, which she didn’t have and couldn’t afford. She started researching and came across the OIFE, wrote an e-mail and asked for help.

The OIFE accepted the challenge. A donated wheelchair was soon available. A diving school was found at the destination. They agreed to take the wheelchair with them by ship, free of charge, on one of their regular transports to Indonesia. Two years later, the OIFE received an e-mail. Attached was a photo of the young woman. She was sitting in the donated wheelchair and wearing graduation clothing, holding her diploma!

What do you do as OIFE secretary, and how is a typically workday for you? 

I work on OIFE’s contact lists, help with the OIFE Magazine, create blogposts and prepare documents. I also do mailings and correspondence. Once a week I have a zoom meeting with Ingunn to discuss tasks.

What does it mean for you to live with muscular dystrophy, and how has it impacted your life?

Living with muscular dystrophy means that everything you do becomes more and more strenuous and I constantly have to say goodbye to a lot of things. I have been dependent on a wheelchair since I was 16. At some point I was no longer able to do the job I had trained for. At some point I decided not to drive myself anymore because it would have become too dangerous. At some point, playing the piano, which I loved so much, was no longer possible. And so on…

Today I am on a ventilator around the clock and live with assistance. I have found a new hobby, and I am showering my family and friends with little things I have crocheted myself. I enjoy sitting on our terrace with my husband in the summer and drinking mocha.

Your husband has OI. How does his condition affect him and your life together?

We are a couple who have been living in the household with a (frequently changing) third person for 5 years. It was a huge change that you can never really get used to. It requires mental strength for me as affected, but especially for my husband. It means the complete abandonment of private life and an inexhaustible amount of tolerance and patience.

Of course, we are a happy couple not because of the circumstances, but despite the inevitable challenges and we master our everyday lives joyfully and with a lot of confidence. And we are grateful that there is the opportunity to lead an independent life with assistance.

Is there a particular story from your time at OIFE that stands out as especially memorable?

I particularly remember the AGMs and conferences I was able to attend. In 2009, Ute Wallentin and I organized the first topical meeting “OI in Motion” in Rheinsberg, Germany with around 80 participants from all over the world.

The 2nd photo shows Oliver Semler and me toasting a successful event. In 2010 the AGM took place in Rome, Italy. AGMs were a special highlight for me, because I was able to get to know people in person or meet people again who I had only been in touch with via email. The 1^st photo shows Ute Wallentin and me in the gardens of the hotel in Rome.

Over the past 20 years in OIFE a lot of stuff has happened. What are some of the most significant developments you’ve seen?

Since I started at OIFE over 20 years ago, there have been numerous developments. I would just like to list a few:

• The number of member organizations has increased by around 30 during this period. The number of volunteers, collaborators and financial resources also increased. This made it possible to launch various projects such as Topical Meetings, Investigator Meetings, OIFE-Pass, Flying OI-Experts, etc.
• We now have a say in drug development and activities at a political level (patient engagement). The OIFE has become a permanent structure, and its voice is more in demand than ever.
• The first OIFE newsletter consisted of just 3 pages and had an estimated number of 50 recipients. It has now become a magazine with around 30 pages and covers a wide range of topics related to OI. It is sent to over 2200 e-mail addresses and read by many more.

What would you wish for?

Due to my condition and dependence on a ventilator, I would like to be spared respiratory infections and longer power cuts. And that spring will come soon so that I can be outside again!

This article has first been published in OIFE Magazine 1-2025