Grethe

I joined CHOICE because I live with the disease myself, and when I was diagnosed, there was very little awareness or information about it. My general practitioner showed little interest in the condition. After a few years, I requested to be referred to different endocrinologists because I was not receiving the proper support or treatment where I was.

About 25 years ago, my mother experienced a spinal fracture, and that made me aware of the possibility of getting a DXA-scan myself – but for various reasons, I didn’t receive the results until two years later… after I had broken both my arms. I then received a T-score of –4.7.

I have had trouble tolerating the medication and have tried different options, and now after many years on medication the DXA scans show that I actually only have osteopenia.

It has been on my mind in daily life. Back when I was diagnosed, the recommendation was not to lift or do exercises involving twisting or bending of the spine. Fortunately, the guidelines have since changed. I have lived my life and done many good things, but I have always had to be cautious.

I have attended meetings in the Osteoporosis Association, listened to talks, and asked the speakers for advice, because my own doctor could not always provide answers.

CHOICE attracted me because it is good that research is being done in this area. I have the time, so I am happy to contribute. The Osteoporosis Association has become more visible in recent years, and that also helps raise awareness.

Vibeke

For several years, doctors told me during routine health check-ups: “Your calcium level is high, so you shouldn’t take any calcium supplements.” Then I got a new doctor, who fortunately was concerned enough about my elevated calcium levels to refer me for further testing at the endocrinology department. There, I was diagnosed with hyperparathyroidism, resulting in an osteoporosis diagnosis in 2023. As a result, one of my parathyroid glands has been removed, and I now take calcium and vitamin D to prevent further deterioration of my T-score.

I would really like to take part in CHOICE  as it means that I can contribute to early detection of osteoporosis — both in relation to my own cause of the disease, and to help identify the many other possible causes that can lead to an osteoporosis diagnosis.

Inge Lise

I want to help prevent as many people as possible from experiencing spinal collapse or bone fractures. That is why I also want to support efforts like CHOICE, which aim to detect osteoporosis and osteopenia as early as possible. I did not even consider osteoporosis as a possibility after I had had multiple fractures, but eventually I asked my doctor for a referral — and that was when I received the diagnosis.

My father has also had two low-energy bone fractures, but no one has ever thought to refer him for a bone scan.

I personally take a number of dietary supplements in addition to my prescribed medication, and I pay for a private medical consultant who advises me on how best to combine the supplements.

Ready for osteoporosis?

Being diagnosed with osteoporosis as a ‘young’ person in Denmark is not a piece of cake. It calls for stamina, willpower, patience and loads and loads of energy. It calls for genuine grounding because one thing is for sure; you end up being your own doctor, endocrinologist, dietician, apart from being a specialist of bromatology, a fitness expert and also your own therapist and sandbag.

Below are extracts of my story of being diagnosed with osteoporosis at age 57, with a t-score that called for medication.

Here gores! April 13 2021 I have a DXA scan.

Friday, April 23 2021 – I log into the online medical app looking for an answer to the DXA scan. And there it was, and I almost lost my breath. -3.5. I called my doctor’s office, hoping my usual GP would be answering the phone. She didn’t. On the verge of tears, I pulled myself together and explained the answering doctor what my issue was. She responded with a ‘oh my, that score isn’t good, you need an appointment with your GP soonest’.

I was in shock, and I didn’t understand a thing. I reflected over and over again, and I started a series of self-blaming – what had I not done well enough. Images of the late Danish Queen Ingrid kept popping up in my mind. My thoughts were dark; no more high heels, no more parachuting, in fact for quite a few hours I thought that my life from now on would be very quiet and controlled.

The weekend went by in a blur, and the most insisting images were still those of former Queen Ingrid, and the thought made me incredibly sad. All of a sudden I saw old bend-over people everywhere. Later that weekend I started to straighten my thoughts and to focus on finding material about osteoporosis found in ‘young’ women. I found nothing, and I realized that osteoporosis mostly is seen as an ‘old women’s diagnosis’ in the health system, and unfortunately that still seems to be the case – 4 years later.

I see my GP as both qualified and competent, yet something triggered me, when I had seen her. And at the same time, I felt alone in the world; I couldn’t find reports, stories or other material covering osteoporosis in young women, absolutely nothing.

I had heard about the Danish osteoporosis association and my thought was; maybe I can find help there. I signed up, and that was the turning point for me. There I found in-depth knowledge about osteoporosis in itself, but more importantly a different approach based on facts and the most recent studies. The doctor I spoke to at the association said the best words in connection with the diagnosis: Read all you can about osteoporosis!

4 years later. Osteoporosis is now part of my life, and most of the time we live peacefully side by side. My body doesn’t tolerate osteoporosis drugs, why my life has taken a significant turn. Almost everything in and around my life has been ‘subject to inspection’. 

3-4 years priors to being diagnosed I experienced weird things (all too clear today); fatigue fracture in a toe, a small crack in my index finger and a broken wrist. NOBODY in the health system managed to think holistically and therefore not in the direction of osteoporosis. Although it was a known fact that both my mother and my aunt were osteoporosis patients. 

What could have made a difference? Osteoporosis runs in the family, and I knew that. But years and years ago I would have liked to know what I could and should have done differently; for instance bone-friendly exercising, diet, lifestyle. It wouldn’t have changed the genetics, but maybe the process could have been delayed.