Comments

You must log in or register to comment.

Abishek_Muthian OP t1_iuselpn wrote

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.

460

Whoknows_nmn t1_iuswxbw wrote

Dude, you rock. Like so so so so much. Thank you for this :-)

62

forumwhore t1_iutxgeh wrote

> When I was 32 years of age

How old are you now?

51

Abishek_Muthian OP t1_iuua4uy wrote

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.

124

dreamisle t1_iuv3qsp wrote

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. 🙏

37

Abishek_Muthian OP t1_iuv58ki wrote

Thank you for looking out for your friend, My best regards for your friend.

20

[deleted] t1_iuvwydn wrote

Dude, I developed Sick Sinus Syndrome and Atopic Dermatitis (successfully treated...sort of). I am down with the whole being 70 in your 30s.

3

endymion1818-1819 t1_iuxdc94 wrote

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!

2

ian4real t1_iuutg6h wrote

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.

42

Abishek_Muthian OP t1_iuv522n wrote

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.

23

HMJ87 t1_iuvupdu wrote

>When I was 22, I was told I had the bones of an 80 year old man

I hope you gave them back

7

ian4real t1_iuvyuvw wrote

Hahahahaha Unfortunately, they weren’t refundable

3

shitmattsays t1_iuwnl8b wrote

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.

2

Abishek_Muthian OP t1_iux0ska wrote

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.

2

ian4real t1_iuwpkrp wrote

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.

1

shitmattsays t1_iux0qx5 wrote

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!

2

drugsr4lozers t1_iuu1v1n wrote

Do you know what caused it for you? Or what causes it in general

17

Abishek_Muthian OP t1_iuuajnc wrote

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.

29

drugsr4lozers t1_iuukv2m wrote

I mean—do you know what’s the cause of the osteoporosis? Thank you for the information nonetheless

8

Abishek_Muthian OP t1_iuur8mk wrote

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.

15

misplaced_my_pants t1_iuv4dlp wrote

Strength training is actually something that can improve the strength of your bones over time.

Run it by your doctor.

7

Abishek_Muthian OP t1_iuv55ng wrote

Please check my other comment about strength training.

2

misplaced_my_pants t1_iuxudj7 wrote

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.

3

drugsr4lozers t1_iuvx4ss wrote

Can you restate it?

1

ainosleep t1_iuwxrln wrote

> 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.

https://www.reddit.com/r/InternetIsBeautiful/comments/ykc49d/when_i_was_32_i_was_told_that_my_bones_were_like/iuukrbk/?utm_source=share&utm_medium=ios_app&utm_name=iossmf&context=3

5

TheBirminghamBear t1_iuva85n wrote

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.

3

Abishek_Muthian OP t1_iuvilob wrote

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.

3

thespaff t1_ix9me34 wrote

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

2

Abishek_Muthian OP t1_ixb67hd wrote

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!

1

Balmerhippie t1_iuud5n0 wrote

Did you get your parathyroid checked? Thats what caused it for my wife.

3

Abishek_Muthian OP t1_iuvtssx wrote

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?

1

Balmerhippie t1_iuvuge8 wrote

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.

3

cinnamintdown t1_iuu4f37 wrote

Super cool OP, you might want to cross post to other health related subreddits.

9

cwchabria t1_iuv9v8c wrote

Have you tried Osteostrong? A doctor developed it due to his mother being diagnosed with osteoporosis. It helps build bone strength and density.

1

gabenh t1_iuwjmd3 wrote

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.

1

KrautHonkyCracker t1_iuwpkb0 wrote

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

1

dimitarbp t1_iusqr1q wrote

Congrats for the effort. From a person who works in the field of medical imaging and image processing in a hospital, I wonder what ideally would be the value of this tool to the person who uses it? If you get a dexa scan, the images would be processed already and most of these values and comparisons with the gold standard will be already done and available for the physician. I'm not sure how they would benefit the patient. We're very careful with such data (which is ofc available for him/her to look at), because it can lead to over-treatment caused by unnecessary high doses of medicine taken by the patient without a specific perscription by the doctor. Again, congrats for the undertaking of this challenge and making it work (frontend and backend), I know how much effort it takes.

63

Abishek_Muthian OP t1_iuuec9k wrote

Thank you, One of the main reasons I built this is to reach to people like yourself.

1. When I asked my doc, Why am I the youngest person among his patients who are on average > 60 years, Why I haven't seen any real progress in my bone health even after years of treatment and shouldn't we find why I'm suffering Osteoporosis at an relatively young age?

His answer was that the BMD data we compare with doesn't include all ethnicities, races and those with pre-existing diseases.

I'm south Indian and I suffer from Achondroplasia. There are huge genetic variations within India, BMD reports compare our data to generalized Asian data.

So, One of my goals in Bone Health Tracker is to help build proper BMD data which accommodates all ethnicities, races and also assess the role of pre-existing diseases for bone health.

2. My doc compares previous reports each year to see the progress of the treatment manually using the figures from my Dexa scan report which as you know are small decimal numbers.

A minor mistake in manually comparing the data can lead to wrong outcome. A typical doctor here sees hundreds of patients per day. A typical patient has no idea about understanding this data and has to completely rely on the doctor to interpret.

With Bone Health Tracker now I can clearly see the progress of the treatment with each new report, There's no manual fiddling with numbers anymore. This was something I needed myself for years now.

46

vellant t1_iuwnklu wrote

YSK There is a Indian registry for osteoporis, we use it from time to time. It’s very uncommon for a 32 year old to be osteoporosis , you need to see an bone and mineral disease expert. They’re usually either endocrinologist or rheumatologist by training.

Sounds like you’re on an anti resorptive medication but that doesn’t address the underlying reason why you’re osteoporotic. It’s just putting on a bandaid. I suggest you seek a second opinion.

2

Abishek_Muthian OP t1_iux1spb wrote

Thank you, I will look up the registry.

I was diagnosed with Osteoporosis when my spine fractured and lead to spinal stenosis. I already suffer from Achondroplasia.

Although I seek treatment for Osteoporosis from an endocrinologist, There no real interest in investigating the cause and neither there's communication between the endocrinologist and the spine-ortho. Albeit one of the best ortho hospitals in the country.

I'm planning to look out for another endocrinologist who's willing to indulge in investigating my condition.

2

cinnamintdown t1_iuu48pb wrote

raise awareness for little known things might help get more research and understanding from practitioners

3

pastfuturewriter t1_iuu9vgb wrote

I was wondering this, too. On my test results, it always says good, better, or same (not that it's ever said better).

1

FunkrusherPlus t1_iutr144 wrote

You may be 32 yrs old with bones of an 80 yr old, but you’ve made more of a direct and significant contribution to society than most of us reading your post, myself included.

May good karma find its way to you in abundance 👍🏼

52

gbraide t1_iutfqst wrote

Thank you! Last year during a half marathon I broke my hip. After many dead end conversations with doctors I eventually got myself a bone density scan where I was diagnosed with osteopenia. I am 43 and felt so old and lost. I have struggled to get back to some normality and find that my condition is rare in males by age and work like this gives me some confidence that I am not just an oddity. Thank you again, so much

30

Abishek_Muthian OP t1_iuujzyr wrote

I understand your pain(literally) my friend.

There's a sense of cosmic injustice when you see that all other patients near you are twice your age.

I suspect that Osteoporosis, Osteopenia currently get only end-of-life treatment as only elderly population get it and people like us are rare.

But, Majority of world population is going to be old by 2050 so its in best interest for everyone to start investing in bone health research right now.

Anyways, Some of my bones are in Osteopenia category as well and our main goal should be to not let it become Osteoporosis as well. Please use Bone Health Tracker with your scan report and submit data for research.

Get in touch with me and I'll help you with it.

5

gbraide t1_iuvg3ci wrote

Thanks, I uploaded my data. My scan gave me extra information not required by your site for the femur, I have been given alongside the neck, troch & shaft. Not sure if that data is useful.

I can only speak from my viewpoint of a white British male that every bit of research I found, medical paper, support network seemed to be centred around the elderly or menopausal women. The health service here in the UK is fantastic however stretched to the limit in funding. Something "frivolous" such as a dexa scan is so low down on their services that I had to persistently request something to find out what has gone on. I am taking over the counter calcium tablets (recommended by a UK charity - royal osteoporosis society), upped my calcium intake, started strength training to load up my bones but not given a great deal further. I have seen talk of hormone levels have some impact on this but again I feel I will be given short shrift on this by my doctors. It has been a year since my break and they have booked an appointment to see me in a couple of weeks. Are there other avenues that I should be pushing for?

3

Abishek_Muthian OP t1_iuvib5s wrote

Thank you very much, I will add support for that extra data with you can share the assessment section with me, I will message you in the chat later. The BMD report specs seem to change a bit with different countries, Although I have included all major bone sites from my research.

As for your condition, I believe your doctors have come to a conclusion that calcium intake could fix it before trying out the steroids; The tests are only done annually and I see only minor improvements with my osteoporosis but some decent improvements with osteopenia over past 5 years with steroids.

But steroids would like have side effects in the long run and so calcium+exercise seems like the best bet for your Osteopenia and likely what the doctors think too. You'll see a change next year.

1

newwriter365 t1_iuuarwg wrote

I was diagnosed last month. I’m an annoyingly adamant 10,000 steps/day walker.

I feel like I’ve been scammed. Best of luck to you!

3

Abishek_Muthian OP t1_iuvih9z wrote

I'm sorry, But 10,000 steps/day is actually a scam; It was a marketing tactic by the first step counter companies.

Consider using Bone Health Tracker for tracking the progress of your treatments.

2

newwriter365 t1_iuvu3jm wrote

Yeah, I know the history of the step count, but impact exercise was supposed to stave off osteoporosis.

My body consistently finds ways to screw with me. I'm sick and tired of the battle.

1

Abishek_Muthian OP t1_iuvuukj wrote

I know the feeling mate, But we might have to fight the battle for others around us or at least as a middle finger to the indifferent universe which is always trying to kill us.

1

newwriter365 t1_iuvxmya wrote

Thanks for note. You are right, of course.

I'm not leaving without a fight!

2

AndrewFGleich t1_iuunoie wrote

Anecdotal reference here, but if it helps you feel better, I managed to "break my hip" (repeated stress-strain fracture) last year while training for a marathon at 32! It's crazy how little science actually goes into "modern medicine" but at least we're getting better at recovering. Good luck!

0

gbraide t1_iuvfbjo wrote

Thank you. I actually broke the femur neck during the run. I was in a bit of pain, but you learn to run with the odd bit of discomfort so for whatever reason managed to drag myself around the remaining 6 miles of the course. I think that was later diagnosed as pure stupidity. About an hour after finishing I was unable to support myself so I had to go to hospital. Despite all of this I was adament that it was a muscular problem because surely you can't walk after breaking a femur. How is your running going now?

3

AndrewFGleich t1_ivfbm8y wrote

I'll be honest, I can't stand running, I've never found it particularly enjoyable and even at marathon levels, every mile is tiring. I haven't run since completing my bucket list item this spring and have been swimming instead. To the people that enjoy the activity,good for them, but it just isn't for me.

1

lyinghorizontally t1_iuucrs8 wrote

Have you ever heard of Hypophosphatasia? It's an ultra rare metabolic disease that results in soft bones. Classic signs that you may have this is history of fractures, dental issues and bone and joint issues. Consistently low alp levels is a good indicator followed up by a b6 test that would usually return with above normal results. This may or may not pertain to anyone here just figured I'd share. https://softbones.org/ is a great resource for more info.

16

Abishek_Muthian OP t1_iuupjsz wrote

I haven't, My phosphate levels do come low during my blood profile tests which is done for deciding whether I can take the yearly bi-phosphate injection for Osteoporosis; I wonder whether Hypophosphatasia could be the reason.

I also have most of the signs you've pointed out, So I will get tested for Hypophosphatasia.

I cannot appreciate enough on behalf of everyone for bringing awareness to this by commenting.

19

lyinghorizontally t1_iuvk4v6 wrote

Thanks for the kind words and I hope I can bring about awareness. I went through the process of getting diagnosed myself not long ago. There are a few groups on Facebook, if you search for Softbones or Hypophosphatasia, that have a really great community. There are many people on there that say they've been diagnosed with osteoporosis, but it's actually hpp. I haven't had Dexa scanning done yet, but when I do I'll be sure to come back and use your site. If you have any questions let me know and I can try and help in any way.

If you're located in the US, https://www.invitae.com/en offers generic testing and even has a free program to test you for this. https://www.invitae.com/en/discover-dysplasias/

5

Abishek_Muthian OP t1_iuvua1y wrote

Thank you for those resources, I'm in India but it would help others from US here.

What triggered you to get diagnosed for HPP?

Edit: Typo

1

lyinghorizontally t1_iuyzzxh wrote

Honestly, I had yearly blood work done for probably about the past ten years. Some for my work's health insurance and some for personal reasons. I noticed that my ALP seemed to be low every year. I spoke with my Dr. and he wasn't worried about it at all. He even wrote on the results ''OK'' next to it. Usually my Alp is in the 15 range.

At the beginning of February, I was working on some mental health issues that never seemed to really respond with medication and I went back to look to see if maybe my blood work could provide some answers. I started digging deeper into ALP because that was really the only thing that was constantly low. When I started doing some research I came across Hypophosphatasia.

I spoke with my Dr. and they told me they personally really don't know much about it, but they had looked it up after our first meeting and knew there wasn't much as far as treatment goes. Following my research I requested to get vitamin B6 testing and that came back as abnormally high. I kind of figured I was on to something then and requested the genetic testing.

As far as B6 goes, it is no wonder that this disease can cause some mental health/energy issues. Even though B6 may be abnormally high, someone with Hypophosphatasia doesn't process it correctly and it may not make it to where it needs to go. This is the way I understand it, but I'm not that great at understanding the scientific reports.

2

Abishek_Muthian OP t1_iuzrskn wrote

I feel you've done well by indulging in your research instead of blindly relying on diagnosis of a medical professional, There seems to be a general lack of scientific curiosity among medical practitioners treating bone diseases; I believe this comes from the fact that it's usually the elderly who come seeking treatment from them.

1

not_lurking_this_tim t1_iut421o wrote

How does one get a BMD report? Does it have to be prescribed?

15

Cqwatts t1_iutuvdd wrote

Depends, in my state (GA) people can come to my local university and pay for a dual emission X-ray absorptiometry or DEXA scan that provides bone mineral density as well as body fat. Some people get them because of a referral from a doctor. I assume with the various state laws you may be unable to get them in some states without a doctor’s Referral.

3

SomeFosterKid t1_iut2tjv wrote

That’s really cool, great job setting this up I’m sure those affected will get some benefit! With early osteoporosis like in your situation is the condition helped at all by weight lifting or is that not really known yet?

5

Cleistheknees t1_iut4574 wrote

Not a well-studied question. Resistance training seems to reliably increase some factors within BMD (mainly sclerostin and osteocalcin) but the increases are generally clinically insignificant, ie they aren’t big enough to even budge the osteoporotic fracture risk calculation.

This highlights why resistance training and adequate bioavailable bone minerals are so critically important during development. For the most part, once you’re 30 maintenance is really the name of the game.

1

Abishek_Muthian OP t1_iuukrbk wrote

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.

1

candroid_man t1_iuuypw1 wrote

I don't actually have any use for this project, but I just wanted to thank you on behalf of the FOSS community.

Not a lot of people value the privacy of the users, and as you know most developers use the user as the product. Since this project is free and open source it can help more people, and it just shows you care about the people

5

microcandella t1_iutqrvf wrote

Very cool! (also I caught a typo-- "Tack the health of your Spine, "

4

Abishek_Muthian OP t1_iuumt5t wrote

Thank you for finding it, I've fixed it.

3

microcandella t1_iuuqzm8 wrote

Between you and me I hate finding things like that when it is so irrelevant to what you are actually doing, yet I know from experience how some will freak out about it. Good work!!

3

Abishek_Muthian OP t1_iuurz3u wrote

Lol, I agree. I must have seen the website hundreds of time now and yet I didn't see it till you found it out. Keep doing the good work!

2

Fictionarious t1_iuttpgr wrote

When the skeleton war begins and the strong-boned among us are revived to do glorious battle, your basic brittle bones will be passed over to -

Oh wait, this isn't r/Neverbrokeabone. Uh . . . good work I guess. I'll try to put in a good word for you; the bonelords may show mercy to one that used their meat-suit to promote bone health.

4

Abishek_Muthian OP t1_iuun1jp wrote

Lol, I'm indeed thinking of posting to r/Neverbrokeabone as well because I need baseline data of BMD from those with healthy bones too.

5

hccr t1_iuug3s4 wrote

Woah I’m 29 and just got diagnosed with this last week during a preventive bone scan that turned up already with osteoporosis in the spine and osteopenia in the neck and hips. Thanks so much for this!

3

Abishek_Muthian OP t1_iuuq0vt wrote

You are not alone my friend, There are others in similar age group in the comments here.

Please use Bone Health Tracker with your BMD test report.

2

MafiaMommaBruno t1_iuums0t wrote

How do you find out about bone density and health? I usually only go to a doctor when I desperately need to. Next time I'm in, what do you ask to check?

Edit: I was downvoted for asking a question :(

3

Abishek_Muthian OP t1_iuuqa7x wrote

If you have frequent fractures, Your doctor would recommend a BMD scan test.

1

MafiaMommaBruno t1_iuuuqw7 wrote

Okay. That's good to know. I seen pretty resilient so maybe I don't. Glad there's a way to test now. Maybe kids that have to worry about it in the future will get better help.

1

adsvx215 t1_iut3w3g wrote

This is a great thing you've done. While I am lucky to not need it, I'm thrilled it now exists for those who do.

2

Traevia t1_iutp2uq wrote

Congrats! This looks awesome. I literally have the exact opposite problem personally. My bone density was tested to be rediculously high to the point that I have ligament and tendon damage instead of bone damage.

2

Abishek_Muthian OP t1_iuunr33 wrote

I'm sorry that you have to face this. One of my goals with Bone Health Tracker is to raise awareness about all bone health diseases and to help build better treatments.

Your BMD report would be useful too, Consider using BHT.

2

centercounterdefense t1_iuwma56 wrote

Do you float?

1

Traevia t1_iuwrp0o wrote

Yes. The biggest thing about it is that I am much much more likely to damage ligaments and tendons instead of bone. This is actually considered far worse as bones heal way easier and with less long term issues.

1

centercounterdefense t1_iuwu9uc wrote

I hope it hasn't been too much of an issue for you. I've always wondered if I have some kind of bone density issue because I don't seem to be as buoyant as others, if that makes any sense.

1

PeachTeaKid t1_iuuozag wrote

This incredibly helpful! I was 29 when I was diagnosed with Osteoporosis - its really only been a year that I have known so this will be helpful for me to figure out what works for me.

Im also diabetic so my body said you are never allowed to skip workouts.

2

Abishek_Muthian OP t1_iuurrdt wrote

Thanks for sharing, There are others like us in the comments.

Please considering using Bone Health Tracker with your BMD test reports.

2

shaggybill t1_iuusilv wrote

Testosterone and estradiol are your friends here. Make sure both are optimized. Not "normal." Optimized.

2

meastman1988 t1_iuwj8ki wrote

This looks incredible!

Nothing is more terrifying than the unknown... And the idea that something is going on with my bones and I don't know about it, terrorizes me more than any idea of a "specific thing" happening to my bones.

2

KarlSayle t1_iuwtuio wrote

Hi, great work on the app. Just thought I'd mention your secrets/fragmenta.json has been committed to your repo. Might be worth getting rid of that and changing your secrets if you've not already done so. Keep up the good work!

2

Abishek_Muthian OP t1_iuwxo9v wrote

Hi, It was done on purpose. The repo is just a development branch and secrets don't have any real secrets. I committed the file for the ease of reproducibility.

Thanks for watching out.

2

_U53rX_ t1_iut4rz3 wrote

Absolut Legend! Respect bro!

1

okawei t1_iutakbt wrote

Are there any loops you had to go through when building this with HIPAA compliance?

1

Abishek_Muthian OP t1_iuumwgv wrote

No hoops, Just not collecting any Protected Health Information (PHI).

2

phillyvanilly666 t1_iutd6js wrote

That’s great! Thank you for that as I suffer from osteoporosis too

1

Abishek_Muthian OP t1_iuunicq wrote

Thank you, Please consider using Bone Health Tracker with your BMD scan test report.

1

shoeless001 t1_iuuhu87 wrote

Sorry you are going through this but kudos for doing something truly useful.

1

me_team t1_iuuqxp2 wrote

As a data guy, I love this so much! Great job!!!

1

ClonedLiger t1_iuus54e wrote

“They called me Mr. Glass”

1

Famous-Somewhere9191 t1_iuuzrb1 wrote

Celebs mean nothing to me, it's gestures like these that make me look up to a person. :) Thanks for your contribution!

1

TRLK9802 t1_iuv7be5 wrote

Have you been tested for hyperparathyroidism? I've suffered from this condition and it was very hard to get a diagnosis because my calcium wasn't very high. I had done my research and was convinced of my diagnosis; I went to over a dozen doctors before I was offered surgery and I ended up having to travel over 1000 miles from home. I was 32-33 years old when this happened.

1

Abishek_Muthian OP t1_iuvh6cb wrote

I assume my thyroids were tested as part of my other tests previously, But I have to test again.

Were you diagnosed with Osteoporosis? Btw, There are no doubts that I have brittle bones as I've explained in other comments due to my fractures and the surgeries I had to undergo to fix them.

1

TRLK9802 t1_iuy0w9y wrote

Thyroid glands and parathyroid glands are very different.

Parathyroid glands regulate calcium in the body. There are 4 tiny parathyroid glands behind the thyroid gland, thus the name..."para" means "next to," and while these glands are near each other, they perform entirely different functions.

Sometimes, for unknown reasons, a parathyroid gland will develop into a benign tumor (sometimes more than one gland is affected, but most of the time, it's one gland); this is primary hyperparathyroidism.

When there is a parathyroid tumor, the affected gland that has developed into a tumor goes into overdrive and the other glands go dormant. The tumorous gland pumps out lots of PTH (parathyroid hormone), and this signals to the body to increase the body's blood calcium level...but the calcium has to come from somewhere, and it will be sucked out of your bones and teeth.

So now you have calcium being removed from your bones, causing osteoporosis. Osteoporosis is only one problem caused by these tumors. While these tumors are not cancerous, they are deadly because they slowly kill you...it might take 20 years, but they will kill you eventually if you don't have surgery.

Any young person with osteoporosis should have have been checked for hyperparathyroidism; this means blood tests where calcium and PTH are checked together. Sometimes, these blood tests need to be repeated multiple times to get a clear picture of what's happening.

You can read more about hyperparathyroidism and osteoporosis here (this is the website of the surgeon who did my surgery):
https://www.parathyroid.com/osteoporosis.htm

2

Abishek_Muthian OP t1_iuzt7wy wrote

Thank you for your detailed clarification, I realized para-thyroid could be different from usual thyroid gland anomaly only after my previous comment.

Your comment offers clear view of the distinction, I will get tested for the para-thyroid as well.

2

TRLK9802 t1_iv02uq9 wrote

Please feel free to follow up with me any time. I'm happy to discuss lab values once you have them, etc.

Very few doctors are parathyroid experts, so it can be quite difficult to get a diagnosis.

Having normocalcemic hyperparathyroidism made my diagnosis tricky, but once I found the surgeon who went on to do my surgery, he was quite convinced that I had a tumor based on how my labs looked.

With normal parathyroid function, there is an inverse relationship between PTH and calcium...meaning if one is high within its range, the other should be low in its range (and vice versa). Most of my PTH and calcium levels were within their ranges, but toward the tops of their ranges, so the lack of an inverse relationship was telling.

Also, you will see that the lab range for calcium goes to around 10.2 to 10.4, but only kids and young adults should have calcium over 10.0; once you're about 30 years of age, calcium should be below 10.0.

1

goodinyou t1_iuvw34u wrote

"I was born with glass bones and paper skin..."!

1

TheSpanxxx t1_iuvw6dd wrote

My dad, now 76, was about 38 when he started having severe pains wracking his body. After more than a year of visiting doctors to look for an explanation he finally visited Mayo clinic and saw specialists. They did many tests and were able to discern he had an incredibly rare (as in less than 20 studied cases in the world at the time, rare) disorder with comorbidities that complicated his issues even further.

He's not had a great life physically, sadly. He tried, but his body has failed in so many ways it's hard to describe. But, he was able to receive treatment and have a life. Physically, he is miserable but he is still here and he can do a few things so he keeps plugging away.

I'm sorry to hear about your diagnosis and disease at such an early age. Do everything you can to fight it! And this application you are promoting could help change lives. Keep at it!

1

Abishek_Muthian OP t1_iuwyvtm wrote

It pains to imagine what your dad must have undergone, It's been a hell for me since I was diagnosed among with other existing disabilities.

Thank you for sharing your dads story it gives hope to me and others like me to keep fighting.

You talking about your dad's health issues seems like you have him at very high regard, I wish you and your dad my best.

1

air-hug-me t1_iuwy5x2 wrote

Hi! This is really cool. Kudos for taking control back when osteoporosis seems to take a lot of it.

My husband passed away six weeks ago. Surprisingly not from his bones but another reason altogether. But he averaged a break a year. Some more catastrophic to our life than others. His began at 30. We started seeing a specialist in Dallas at a bone and mineral clinic and he had the markers for osteogenisis imperfects (brittle bone disease) which is genetic when the entire time he had been diagnosed with osteoporosis. One of the major signs was his sclera (whites of the eye) had a faint blue tint to them. He was all set for genetic testing right before he passed away. Figured I would mention in case your sclera might be slightly tinted. In this case the bones do not use collagen appropriately causing the brittle and breaks.

1

Abishek_Muthian OP t1_iux79ze wrote

I'm sorry for your loss and thanks for sharing the story of your husband's ailment.

I haven't noticed blue tint in my sclera and I usually check my eyes quite regularly. But I do suspect some underlying genetic disease as a cause for my Osteoporosis other than my existing disabilities (Achondroplasia). I'm planning to get a genetic test as well.

The real MVP in this thread are people like you sharing the stories of their ailments or that of their loved ones. This will give necessary direction to many people for years to come.

1

GamerZon-7 t1_iux58iu wrote

not the hero we deserved but the one we needed

1

vegancookie t1_iuuhvpa wrote

For a minute I thought this was some way of measuring it without medical grade hospital equipment (like xray machines). Very cool nevertheless!

0

AcceptablePassenger6 t1_iuv8dyp wrote

Are you planning to sell this data or the ML algorithm after its been fine tuned? Medtech will pay you alot for it and I doubt you'll walk away from that paycheck...

0

ProDigit t1_iuuquva wrote

I used to have brittle bones from drinking only milk. Too much calcium. Calcium is a brittle and weak mineral.

My bones have become more dense these past 10 years, by ingesting silica supplements (sand). Bones need other minerals to grow strong).

−3

FrankAndDick t1_iussw0h wrote

80 years old? You Batman?

−11