Dem Bone Scans – Update 3

The month of May is National Pet Month, Bicycle Month, Ehlers-Danlos Syndrome Awareness Month, and National Osteoporosis month. I’d like to write a topical article about my amazing pet that can ride a bike, but unfortunately it wouldn’t be true. I don’t own a pet, let alone a bike riding one. I do however have both Ehlers-Danlos Syndrome and Osteoporosis, and I haven’t updated my blog for a long time, so reluctantly, I decided to write an article about them…

I am sorry for the long absence without a blog post. I’ve been working on another EDS project which has taken up a lot of time. Plus I’ve had some health ups and downs during the last year which I’ll update you on through this month.

In case you’re unaware, osteoporosis is the medical term for weak bones. As we get older our bones get naturally weaker, but in some people it happens sooner and faster. A person with osteoporosis has bones that are thinner and less dense, which can fracture easily. There are numerous different risk factors for developing low bone density, such as age, gender, dietary intake, activity levels, and there are several medical conditions and medications that can increase your risk, such as celiac disease and steroids.

For many the first symptom of osteoporosis is when they break a bone. However, for people at risk they can have a scan to measure their bone density. I have chronic joint pain and use a wheelchair for mobility so I’m at risk for osteoporosis due to inactivity. There is also some limited evidence of a genetic predisposition for osteoporosis in people with Ehlers-Danlos Syndrome, but further research needs to be done. I’ve been having regular bone density scans since 2006. You can read about my previous scans in these links:  2015 – 2016 – 2020

In 2006 I was diagnosed with osteopenia (bone thinning) and in 2015 that was changed to osteoporosis (low bone density). So far I haven’t been given any treatment, other than nutrition supplements, although it was considered in 2020. My latest bone scan was in January of this year.

The scan was done in a hospital on Cobham, the town I grew up in. After the scan I spent a happy hour in the high street seeing how much things had changed. I enjoyed the trip, but the result of the scan was disappointing. I wasn’t given the result of my bone scan in 2020, I was just told it was ‘a bit worse’ than 2015, and my 2024 scan result is worse still. I have an appointment with a rheumatologist at the end of May to discuss the problem.

I’d like to say my friends and family have been supportive and concerned about my low bone density, but not really. To quote one friend: ‘I’m surprised. As someone who knows you well I’d have thought you’d be very dense… You might weigh less, that would be good!’ 🤣🙄

Treatments for osteoporosis can be effective at maintaining and sometimes even improving bone density, but they can also have difficult side effects, such as digestive problems, osteonecrosis of the jaw (part of the bone dying) or more rarely a crack in the thigh bone. The drugs for low bone density come in various forms, pills, injections or a quarterly IV infusion. I’ll update this post after the rheumatology appointment. I’m hoping to start a treatment to stop the condition progressing further. I’ve managed to increase my calcium and vitamin D intake since the latest scan which will help.

Below are my bone density scan results since 2006. The result is given as ‘standard deviations’ away from the norm.

If you’d like more information on Ehlers-Danlos Syndrome Awareness Month please click HERE.

Thanks for reading, Ceri.

ps. Happy Star Wars Day!