I Have Adult Hypophosphatasia

After 2 podiatrists told me I was crazy, the 3rd podiatrist finally sent me to an Endocrinologist who not only did the normal dexa scan (which always came back normal) but did other blood work. He found the needle in the hay stack and diagnosed me in March of 2008.  Since then I have been on Forteo, an injection every day to replace my alkaline phosphates.  Although my alk phos are going up I continue to break bones.  My feet are broke, my ankles, both femurs, my left arm, my  wrists, my right thumb and who knows what else. My doc says "too many to count."  I am in pain all the time on Percocet 3 times a day.

I am a school teacher and work full time. I love my job and never want to quit, it is what keeps me sane.  I have two small children at home. 8 years old and 5 years old. My husband is a saint.  My boys have both been diagnosed and are positive with the Odontohypophos version.  We are worried for them and their future.

I spend many days going to doctors and pain management and physical therapy. The podiatrist has me wearing these AFO's -ankle feet orthotics.  Everything I read online says it doesn't really matter, I am going to contine to break anyway.  The Forteo is not working.  According to Dr. Whyte in St. Louis, I am the 5th patient (through research ) on this injection.  I don't believe it is working. My doc finally concurrs.  We do not have a plan at this point.  I don't think there is a plan.  

I'd love to meet others with this disease and talk. Find out what you are going through.  What options you are trying with your doctors. What you are going through with your families, what type of physical therapy is working for you. 

 

 

 

 

speete35 speete35
41-45
8 Responses Mar 22, 2009

I have recently been diagnosed with Adult onset Hypophosphatasia, I've been one of the luckier ones who has not had too many of the typical symptoms. I've only broken 2 bones, my foot and my coccyx. I have only lost 2 adult tooth so far but I wasn't particularly early with losing baby teeth. My main symptom is extreme fatigue which I'm not even confident is being caused by the Hypophosphatasia, I believe I have CFS or something of that nature. I was diagnosed by blood tests and a urine analysis alone and presently being treated with Vitamin D. There is a possibility my 2 children could have been affected and they are yet to have blood work done to find out.

It is nice to see a few people willing to talk about there HPP. A new group and web site is coming in a few weeks. Everyone should check it out HPP-Choose Hope. It is amazing the things they are going to be doing for the HPP community.hppchoosehope.org. Sept 1, 2012 it should be live. Also, has anyone had problem with the top of there feet the bone between the toes and the ankle, (Right on the top?) Good luck and god bless all.

It is nice to hear from all of you! I'm glad I got this thread started a while back and some of you have made your way here. .....<br />
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I too have had HPP all my life and now have the Adult Onset version. With over 24 broken bones to date, rods in both femurs, a loving husband and 2 great kids, I just take one day at a time. I do work full time as an elementary computer teacher and am in constant pain every day. Most days I go home and go right to bed and feel awfully guilty with my own children who miss me. However, I am the bread winner and the keeper of the all might insurance so work goes on.<br />
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For all of you who are looking for more support, please see the yahoo group: hypophosphatasia<br />
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There is quite a community there and many, many members with a great wealth of knowledge. If you don't hear from me here, that is where I'll be. <br />
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speete

To ALL that have posted Here with Hypophosphatasia and haven't found support you wanted or needed. There in a new and official HPP website called Softbones.org it is a USA based non profit advocacy group for people with HPP. With the help of Dr Whyte and Enobia (pharmaceutical) Company and Deborah Sittig they have started this group to inform patient and caregivers. They are hoping everyone who has been diagnosis with HPP will join there is power in numbers. Softbones and Enobia and the European HPP support groups are putting together a help webpage for people with HPP so they can explain the disease to their Doctors what HPP is. Please join and be a part. There is also a FACEBOOK group called Softbones (same as the webpage) only difference is in real time; we talk about HPP and how and what works for each of us there are over 100 members who have HPP all different types and severities. Join and post your question and concerns all are welcome and no question are stupid. Please introduce yourself when you join and ask away. Check it out you won’t feel alone and you might be surprised on how many are going through the same things you are.

Wow did not thing there were many with this, I am 61 years old was diagnosed with osteoporosis at age 40 with a compression fracture at T12. Many test they found nothing so they said it must be idiopathic (thats when the idiots can't figure it out). I was placed on fosamax for the next 20 years. During those 20 years I kept have bouts of pain and tiredness. Last April all hell broke loose with my back.... after a year of not healing another fracture at T7, I was finally sent to a endo Dr. He spend a long time going over my history, all my loose teeth (i still have them), my IBS history.... He said something is not right, did some new testing for really rare stuff, well I am positive for Hypophosphatasia (twice as high as he would have expected) He will retest in 2 months. They also found my vit D levels very low, not taking vit D, perhaps that will help with the ostoemalasa in the spine. Will I am not happy with this I am happy that I have lived to age 60 without a lot of issues in comparison with the very few others that have this condition.

I was first told I have hypophosphatasia when I was 2 years old at Portland University. I survived that and only had problems with my teeth all the way through my younger years. Then when I was in my 40 I stated getting stress fractures and bone pain. IBpro and alive worked for years. Then I broke my thigh and I have a rod in it. I also have 7 broken bones between both feet. I have been told at 52 years old that i can't physically work my business. I have cronic pain. But I also have God and a great full heart.

Hi Every<br />
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I have had Hypophosphatasia since birth 50 yrs ago. I have several diagnosis like Osteogenesis imperfecta which is very simular to HPP. But just this January I went to endocridnologist and he ran some tests and said I have HPP not OI. I'm have DNA test for OI just to make sure I don't have that too.<br />
I just found this place and I thought I would find some other HPP people that would like to talk.

wow you are the first other person ive met with hypophosphatasia. ive had the disease sence birth. i am now 19 and i had to drop out of school because i can hardly handle the pain of writing do to my broken and disconnected radius bones in both my arms with bone spurs and arthritus on top of that. i REALLY wish i didnt drop out of school but i was a streight A student without a choice or help in the world. i had to have someone scribe for me for exams that counted for half my grade ( i had a doctors excuse and everything) but they were aparrently too busy to scribe for me so i woulld have failed beings they would not exempt me.. ive been to see Dr. Whyte in St. Louis as a child. he wanted to do blood work on me and run certain tests to examine me when i was 8. He flew me in all the way from ludlow ky ( 5 miles away from cincinnati ohio)about 2 months after that i started water physicall therapy as my doctor suggested for me to do at the ymca pools and i ended up falling down the very last 100 step outdoor staircase which had no banister and i fell and broke my right knee. i ended up being in a wheelchair for 5 years sence then and a walker for 2..(ive had the wheelchair 2 years before the fall alsobecause i could not walk some distances without having to sit down due to my hairline fractured ankles.. i also found out my local bone specialist here knows nothing about my bone disease and he has been lying sence i was 8 years old. i found out immediatly after i turned 18, when i went in for arm pain because it was to the point i couldnt bend my elbows even slightly without screaming in agonizing pain. he recomended me to an arm specialist specialist dr cornwall he aparrently wanted to saw off 4 inches of my radius bone. so i asked, "do you think that would be a good idea beings i have hypophosphatasia and all??? he replied" oh no i was never informed and have never heard of this disease. so my bone specialist dr crawford come in the room that i have been getting checkups from sence i was 8 and told me that he was not informed that i have the desease that he dont even think i show symptoms of it. but when i asked him if he knew what the signs and symptoms were he said that he did not know. so how can he say i dont have it if he doesnt know anything about it??? i know that he has known because i have the medical records to proove it. and every appointment i have gone to i have to spell my disease out for them... H Y P O P H O S P H A T A S I A and they would always right in my records i have HYpophosphatemia TEMIA?? thats a blood problem last time i checked, besides i have the genetic test record that says i have hypophosphatasia..... because of that problem social security is putting me under review and i had to appeal because they think i can work due to i have HYPOPHOSPHA TEMIA and not TASIA ( the hospital messed up my records which they have for review) i am currently waiting on a court date for my appeal... (im a year married and have a baby on the way i would not be able to support my child without my check :( ) i would like to get in contact with you in hopes we could both exchange helpfull information.... email me at stephanyanddanny@yahoo.com. My names danny and please name the subject as hypophosphatasia. sorry for all the typos im surprised i was able to type this long

I do not have what you do. I really smpathise with you though. I have a inner-ear disease.I have dizziness and extreme pain in my skull like a 24 hour migraine!If you want to talk, just pm me...<br />
Blessings