Submitted by Abishek_Muthian t3_ykc49d in InternetIsBeautiful
When I was 32 years of age I was told that my bones were like that of an 80 year old due to a health disorder called Osteoporosis.
Osteoporosis can make our bones fragile and likely to break.
1 in 3 women over the age of 50 years and 1 in 5 men will experience osteoporotic fractures in their lifetime. It is likely that your parents and grand parents are already suffering from Osteoporosis.
Osteoporosis is identified using a Bone Mineral Density(BMD) scan test which gives scores for our bone density and is compared with the known scores from the healthy individuals of same age.
I was told that these known scores does not include all races, ethinicities and are generally unreliable for those with pre-existing diseases. This makes it difficult for providing proper healthcare, Even more so for outliers like me.
I'm attempting to change that with Bone Health Tracker.
Bone Health Tracker classifies the Bone Mineral Density(BMD) scan test report to display the reports with visualizations to better understand the bone health and to monitor the progress of bone health treatments .
1. Healthcare providers currently have to manually compare the BMD reports of their patients every year to analyze the treatments, With Bone Health Tracker's dynamic chart feature they can now do it automatically and even patients can track the progress of their treatments.
2. Skeleton visualization helps to easily understand which bones are affected by Osteoporosis, Osteopenia even by those without prior medical training.
3. BMD scan test reports without any personal information can be submitted for the research of bone health and treatments for bone health diseases.
No Protected Health Information (“PHI”) is collected during the entire function of Bone Health Tracker as only assessment section of the BMD scan test report is needed.
If you (or) a family member has taken a BMD test, Consider using Bone Health Tracker to monitor the progress of your treatment and submitting the non-personal data for research. If you are researcher dealing with bone health, or know anyone who would be interested in the data gathered by the Bone Health Tracker and help improve it; Please get in touch.
Thank you for reading.
Dude, you rock. Like so so so so much. Thank you for this :-)
> When I was 32 years of age
How old are you now?
I'm 36, Every other patient with my doc is above 60 years old. I believe since Osteoporosis affects only the elderly usually there's not much investment in this area.
This is awesome! I have a friend with MS and a background in programming. He recently had to enter assisted living but is attempting to take on some gig work and get back into coding. Definitely going to share your story with him for inspiration. 🙏
Thank you for looking out for your friend, My best regards for your friend.
HIS story inspired ME, thank YOU for sharing it! 😊
Dude, I developed Sick Sinus Syndrome and Atopic Dermatitis (successfully treated...sort of). I am down with the whole being 70 in your 30s.
I've got a similar condition though not as serious as you have it seems. I broke my hip last year as a result. I'm 42. This is a great innovation thanks!
Are you vegetarian?
Wow. Funny story. When I was 22, I was told I had the bones of an 80 year old man (via an impromptu dexa scan, I worked there). I started treatment at that time. And quit a few years into it. I’m over 40 now and a new doctor ran a multitude of tests, and ruled out osteoporosis, instead diagnosing me with a very rare mutation of collagen. Referred me to the Rare Disease Clinic in LA (2 or so in the country). Just thought I’d mention.
Thanks for sharing, I have already faced consequences of brittle bones incl. nearly ending up as a quadriplegic as my cerebral spine fractured without even me knowing about it.
So there's no doubt whether I have brittle bones, The doubts are why I have them and which might very well be a rare disease like yourself instead of Osteoporosis. There are other comments which suggests Hypophosphatia.
>When I was 22, I was told I had the bones of an 80 year old man
I hope you gave them back
Hahahahaha Unfortunately, they weren’t refundable
Hi /u/ian4real - 45M here with similar T-scores as you. Is there a name for this collagen condition? Also, were there any markers in your blood work or specific blood/urine tests that helped with your diagnosis? I did two-years of parathyroid injections with no marked improvement and recently started bisphosphonate treatment. We still don't have cause yet, so we are treating the symptoms and I'm staying off ladders.
I'm getting treated only for the symptoms as well with biphosphate injection every year, Since I already have Achondroplasia(Dwarfism) I think there's no real interest to investigate the cause; Besides its the scientific rigor needed is not available where I live.
Hi. Unfortunately there’s no blood work for mutations, other than genetic testing and biopsy. I haven’t gone to the rare disease clinic. He ran all the usual bone related work-ups, calcium, thyroid, ruling out bone loss etc, review all my many bone densities, looked at X-rays of my spine and hip. Also, the fact I have not broken any bones in my life. He’s a rheumatologist professor at a Medical school. I think my prior doctors were quick to diagnosed me and get me out of the way. In my case I was going to being treated and it wouldn’t have helped. These medications can be dangerous taken for a long time.
Sounds all too familiar. We've done several rounds of blood/urine tests and our next step is genetic testing. I have an appointment with the genetics team at the Mayo Clinic early next year to see what they have to say. Cheers!
Do you know what caused it for you? Or what causes it in general
No, I just get the same treatment as any other elderly person gets now and they are just temporary measure to be taken every year. So we suffer the consequences of extremely brittle bones.
I mean—do you know what’s the cause of the osteoporosis? Thank you for the information nonetheless
I don't think there's concrete answer for that, Like any other disorder which affects only elderly (most of time) it gets little investment for scientific research.
This needs to chance as majority of world population would be old soon.
Strength training is actually something that can improve the strength of your bones over time.
Run it by your doctor.
Please check my other comment about strength training.
Ah I see that's definitely a tricky place to be.
You might want to reach out to the folks at Barbell Medicine.
They're a group of mostly medical professionals like doctors and physical therapists who are also elite or advanced strength athletes, so they might be able to work with you on your specific issues to find a way to improve your bone density and strength in a way that doesn't cause pain.
Can you elaborate on the kind of resistance training you did?
Mainly body weight and lifting weights; The latter I've stopped recently as I've mentioned here - https://www.reddit.com/r/InternetIsBeautiful/comments/ykc49d/comment/iuukrbk/
Can you restate it?
> I've been doing some resistance training for some years since I was diagnosed. Although I felt good after exercise i.e. w.r.t pain reduction it doesn't seem to help with my bone density i.e. If I don't take the bi-phosphate injection for a year; My density drops further even when I didn't change the exercise routine.
> Lately, The pain from exercise itself is becoming greater than the pain from not doing it. So I have dropped couple of routines like weight lifting from my exercise, My next BMD data would probably tell how it has affected my density.
Only asking because another individual I know is in a similar bot - have they checked vitamim D levels? Very low vitamin D levels can cause poor calcium absorption and bone densities.
I was diagnosed with Vitamin-D deficiency when I was a child and I took supplements.
Now the Vitamin-D is at normal levels in-spite of osteoporosis, Likely because of the Alpha D3 supplements.
Doctor did say that my calcium absorption is low, But no investigation was done to why. Vitamin D supplements seems to be a standard course of action.
This exact thing happened to me, same kind of age too, early 30s, bones of an 85 year old. This was about 10 years ago now. and I was just hunting around to see if i could find any new developments and found your post.
In my case the cause was found to be Hypercalciuria, my kidneys essentially reject calcium, so my body is caught in a cycle of not having enough calcium, leeching it from my bones, but then simultaneously peeing it all out, repeat.
No cause for this was found though, and there aren't any great treatments that i've found either- though Thiazides, which are usually used to control blood pressure, have the side effect that helps to counter-act it a little. Anyway, sharing in case that helps you on your own journey. <3
Thank you for taking the time to comment, I've gained more information about various possible causes through this thread than I did in all previous years.
My doc does say that my body is not absorbing Calcium but no effort was made to find why. I'm adding tests for Hypercalciuria to my list of tests to be made.
Thank you again!
Did you get your parathyroid checked? Thats what caused it for my wife.
I presume it was tested among several other tests I had but I will have to get it tested again.
Does your wife take treatments for both Parathyroid and Osteoporosis now?
She had the para removed. There was a Dr at Emery that specialized in that surgery.
.
Don't assume. My wife self diagnosed, asked for pertinent tests, declined the standard treatment and foudgnd this surgeon in another state. Her symptom was high calcium in her blood.
.
She still takes meds for the bone loss.
Super cool OP, you might want to cross post to other health related subreddits.
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Have you tried Osteostrong? A doctor developed it due to his mother being diagnosed with osteoporosis. It helps build bone strength and density.
Hey, I also have a bone disorder as well although it is the opposite of Osteoporosis. Osteoporosis, the bones become less dense and become brittle as a result. I have been diagnosed and been living with Osteopetrosis, an extremely rare disease where bones become more denser and like stone. Not enough osteoclasts are produced in my body to support the denser bone causing them to dissolve and fracture apart. Been a pain but I'm still surviving and things could have been worse.
hey, good job! you should post this into r/QuantifiedSelf too
Wow are you me? Lol I was also diagnosed with osteoporosis at 30 (also male). It's extremely unusual for men our age. Thank you for putting this together! I'm curious what you've been tested for, I've been through many different ones and nothing yet that explain the bone loss
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