I am a male in my 50’s who has osteoporosis and my osteopenia has become osteoporosis. I have broken the bones in my feet 8 times and four or five breaks in the past three years.
My doctors were trying to figure why so many breaks. After all the testing I have been diagnosed with Adult Hypophosphatasia. I am trying to learn what this is and how bad this will get if it progressively gets worse over time. Any help or resource materials to review at all would be much appreciated. Thanks in advance
It seems you have a truly rare disease. What kind of treatment has your medical team been able to offer so far? I have to confess I had never heard of it before your post here. All I now know is what I've just read on the internet. Hopefully you will be able to get some help.
Dr. Aliya Khan is a medical/scientific advisor to the IOF. Here is the link for her presentations which include a June 2022 talk on the topic. If anyone is interested in the topic of hyperparathyroidism Dr. Khan is one of the authors of the updated international guidelines for its evaluation and management. This link includes her May 2022 boneresearch.ca/news-articl... presentation.
I had to look it up to understand what this was and I found this website. It mentions orthotics for feet to help with the breaks. I’m sure there is more info online but I attached the link I found. I pray for you to find some resources to help you.
Your doctor should be answering any and all questions you have and be providing you resources to help you learn more. If your doctor is not experienced in your condition, I would try to find one who is. I hope you find someone who can help you navigate this.
Many people are surprised that osteoporosis can affect men. A man's risk of an osteoporosis fracture is greater than his risk of prostate cancer.
The International Osteoporosis Foundation has some excellent resources for men - worldosteoporosisday.org/re...
The Genetic and Rare Disease Information Center at NIH also has resources on Hypophosphatasia (a rare bone disease) - rarediseases.info.nih.gov/d...
Hi Mr_Glass,
You are fortunate to have gotten this diagnosis. I say this because it is a very uncommon (though not "rare" in the clinical definition) disease that is often misdiagnosed. Sometimes, it is misdiagnosed as osteoporosis, and this can cause problems because some osteoporosis medicines are actually contraindicated for people with adult HPP. So, it's good that you have someone looking after you who is familiar with the disease.
I highly recommend you watch this great webinar on the American Bone Health website. It explains adult hypophosphatasia in terms a layperson can understand. You will learn what to expect and what are your options for treatment.
Adult Hypophosphatasia: An Uncommon Bone Disease Hiding in Plain Sight
americanbonehealth.org/bone...
good luck!
Thank you for your comments. I have had osteoporosis for several years and my endocrinologist had proscribed me Alondronate (Fossimax) (spelling?)
It has not helped me at all over the past 2-3 years and as we have learned with this disease it has been harmful to my condition. Hopefully I’m on the right track and as long as my health insurance doesn’t give me hard time, I will be able to get some injectable medicine to actually help strengthen my bones. I will give your attachment a look. Thank you again for your response.
newly diagnosed and anxious
Newly diagnosed with Osteoporosis 
Research and Future of Osteoporosis Treatment
Has anyone consulted with Dr. Doug Lucas's clinic?
pros and cons of prolia
