Hi everyone, I thought it might be a nice idea to start a discussion where people can share their experiences to date of being a younger person with osteoporosis. There’s no obligation to share, but I’m sure many younger people with osteoporosis would value hearing from people who have gone through similar things to them.
For me - I’m Jim, I’m 36 now and was diagnosed with osteoporosis when I was 27 following a spinal fracture while I was on holiday in Portugal. I remember being so confused as to how I could possibly have osteoporosis – a condition I associated in my mind mostly with older women. It turns out that a drug I received as a teenager – corticosteroids – to treat some other health conditions had probably contributed to me never building up the bone mass I should have done in my youth.
After my diagnosis I was prescribed alendronic acid, a bisphosphonate, and I took up running to try and build up my bone density. For a long time, though, it felt weird to tell people that I had osteoporosis, as they were often just as confused as I was!
These days, I’m far more confident talking about osteoporosis and my other health conditions, which is why I decided to get involved with the Royal Osteoporosis Society. Thankfully, my DEXA scans show that I’m not losing any more bone mass, so while I don’t know what the future holds, I’m less anxious and more at peace with living with this condition, and doing what I can to spread the word that, yes, you can be young and male and have osteoporosis, and no, it’s not the end of the world!
Please feel free to share your own experiences if you’re comfortable doing so, as I’d love to hear them.
Hi Jim, thank you for sharing your experience. It has helped me to feel less ‘unusual’. I was diagnosed in my early 30’s but I had to fight to get treatment (Risedronate and now Ibandronate) because I didn’t meet the NICE guidelines because of my age. I fractured my hand, and that made Osteoporosis a reality. Prior to that, although I had a diagnosis, there was little information available about what that meant for my future, i.e. how having it in my thirties will impact me in my later life. I hope things improve for younger people in the future, that they will get support and treatment - something that I think is lacking.
Thanks for sharing your experience Minnie. Impact in later life is also something I worry about - I’m relatively healthy now, but I hope I’ve got at least another 50 years ahead of me and I expect at some point in the future it will be inevitable that I have further fractures, even if I do everything right to strengthen my bones. I find communities like this one helpful though to keep me optimistic about the future!
Loved reading everyones stories, I’m 24 with osteoporosis was diagnosed at 22 still all very new to me and something I am deciding I need to learn more about!
Wow, thanks for sharing your stories. This helps more than you know, you are all so brave. I’m Esther, 35 female, living in London, and just been diagnosed and currently in month 3 of crutches with my second femoral stress fracture in 3 years (this ones a bad one). Long story cut short, history of severe eating disorder, which lead to fracture number 1. I then tried to get healthy, but never had doctors look at my bone health, and thus now I’m healthier and competing in ultra-cycling races and found a huge passion for cycling, only to have another stress fracture (throw in some rib fractures along the way too) as I just never got my energy balance right and wasn’t doing an impact sport or the strength worth to support my bones. I’m about to start teriparatide and have a lot of work ahead of me. Right now, I’m just really wanting to get back to being able to walk, and try and raise awareness of the impact of ED and RED-s on bone health, even if it’ helps one other person it would be worth it. I would love to learn about how others learn to live normally again, right now I’m terrified of being injured again and have no idea how I’m going to get over that, especially in sports. Hope you are all well, and looking forward to the Vit-D filled spring which is around the corner!
Thanks for sharing your story Esther. Very sorry to hear that you’ve had a bad fracture recently. Do come join our next younger person’s online session on the evening of Tuesday 3rd March, as there are definitely some people who attend who have similar experiences to you.