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Abishek_Muthian OP t1_iuuec9k wrote

Reply to comment by dimitarbp in When I was 32, I was told that my bones were like that of an 80 year old. I have built a web application to track bone health and monitor treatments for those like me. No sign-up, No personal data collected, Completely Free and Open-Source. by Abishek_Muthian

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.

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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.

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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.

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