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A Day In The Life…
Stories about a normal day living with HPP
To really know what living with HPP is, you must see what a HPP patients day is really like. Most people see us as someone that walks with a limp, uses a cane or crutches and of course the wheel chair. What they don't see is the pain, or the little thing that we can't do anymore. Here you will find true stories from HPP patients that we hope will give you a glimpse of what it is like to have HPP.
Today was like every other day not sleeping more than 30 minute to an hour at a time then waking to the pain. I get up today at 5:15 am it hurts to bad to just lay in bed. For me mornings are the best part of my day. While I hurt in every bone in my body and just to get out of bed seems to be a chore, I look forward to some movement and a hot shower. The hot water takes some of the pain away and gives me the feeling of being normal again.
Dressing is not easy anymore either. I know it sound funny but to put pants on is difficult, to put sock on reminds me of a child learning to do it. Then comes the wrapping the ankles and putting on shoes. Again tying them is difficult because I can bend like I use to. Hypophosphatasia changes your life in so many way and no one see's it but the ones that are closet to you. In my case only my wife. Other see me in the morning an think "well he has to use a cane or wheel chair" they didn't see what it took to just get out of bed and dress. Or the the pain I feel all the time.
Today I go to a casino that is close and at 6:00am there is not a lot of people there and it funny but it quit. I have some water and walk slow to get the body moving and sit and write the things I want to get done today. My list is always a wish list, I never can accomplish all the things I use to. I'm home by 8:00am and the pain is starting to get stronger and I start my day. Today I have to run some errands and do some things for the foundation. Driving is fine for about the first 5 min then the pain starts in my left leg. It hard to sit I'm consistently moving and adjusting my body to the seat. Walking is always a mystery. I start out getting out of the car and walking into a building a store and I'm fine for the first 2 or 3 min(if feels good to be out of the seat in the car.) but then the pain,, walking gets slower and harder. I use a walker with a seat today so I can sit then walk a little then sit. By 1:00 the head aches start and the pain is starting to take a toll on me. I usually have to lay down, but that hurts almost worst then sitting or walking. I am always changing what I'm doing I cant sit still it hurts to bad. I think it's the pressure points. Today by 3:00 I feel like I cant take much more and I lay down only for about 15 min then I'm back up sitting then walking a little always moving. By 6:00 pm I'm done. Get ready for bed which feels good to get my shoes off. But only for a few min and the pain get worse so I have to put my shoes back on, even in bed. The joints are so hot and the pain is so bad the tears roll off my cheeks. I just bury my head in a pillow and pray to just let me sleep with no pain…
The day started out like any other day except my Hypophosphatasia was acting up; which mean my at least 2 of my long bones felt like someone took a baseball bat to them during the night and they were hot. But today was a special day so I put a smile on my face and got on with the day.. Today we were going to look for bridesmaid dress and I was going to be the bridesmaid first time ever. My sister was the bride and her girlfriend maid of honor we had 6 wks before the wedding date; it was a fast wedding because the father of the Groom was leaving (work) and wouldn't be back for a yr. We had a great day planed; going from store to store. It wasn't easy because most places don't have dresses that fit people with severe scoliosis so that was hard. . While trying on a dress my shoulder partially dislocated. It wasn't any trauma it happened just by pulling the dress over my head. This isn't unusual for a person with fragile bones cause by Hypophosphatasia. Normal everyday things can cause and injury and severe pain. We went out to the car and I was able to put my shoulder back in to place. I have gotten good at this because it happens at least 1 a yr. I always carry a break box (that's a suitcase filled with braces and splints and sling everything thing you need to support new injuries). I put my arm in a sling and took half of pain pill and then we went to Lunch. . No time for the ER I was having too much fun, it's a special day. Had a few more places to go and to pick out a shoe, which is another huge task, because heels can't be too high or my ankles will break. I tried on a pair of flats and took a walk in the store with them and on the 3rd step I felt the ball of my foot crack! The soles of the shoe were too stiff and hard so by bending my foot to walk it put to much pressure and it cracked the bone. Not enough that I need a brace but enough that I was done trying on shoes. So much for finding shoes! I guess will have to wear my gym shoes under by long dress.
We decided to have pizza for dinner, by now the foot and the shoulder was throbbing, but it was pizza time so you push through the pain. I got up to leave and as I pushed off the arm chair my right femur fractured into 4 pieces, It made me loose balance and I didn't full fall because my sister caught me. My right knee did hit the ground just slightly and my femur was now in 6 pieces and the rod was bent. I was rushed to the ER and by the next morning I was in surgery for 7 ½ hr. They re-rodded and plated what they could back into place. I was put in a long leg cast for 5 wks and could not stand nor put any kind of weight on either leg for safety reason. So there was my dream of being a bridesmaid. I was lucky that between my brother and cousin they could get me in and out of the car so I could just see the wedding.
This is life with Hypophosphatasia or HPP… You can look fine and be able to do the simple things and then in the next minute be in excruciating pain.
Dave - ( October 2012 )
I was thinking when writing this there is no real way to convey to people how bad the pain is and how it hits you in just a few second. By looking at me you would never know I had a rare bone disease. You would think maybe I hurt my ankle. But it's the pain that is so bad about having HPP for me. You really can't plan anything because you don't know how you are going to be at any given moment. So you just live your life and when it hits you, there is nothing you can do.
It's 8:00 pm and the pain is just overwhelming. I trying lying in bed but it hurts to bad, sit in a chair, can't do that. Walk slowly around the house and back to the bed. This is the routine for the next few hours. Finally at midnight I fall asleep. When I wake the pain is in every bone in my body, I can barley move my legs and my fingers. My knees and ankles are hot to the touch and the pain. I just don't know how to describe it. Looking at the clock it 1:30 am. I take a pain pill and toss and turn, in the chair back in the bed as time just won't go fast enough for me. About 4:00am I again fall asleep to just wake again at 5:00am with the same pain.
Getting out of bed I use my wrist and arm to push the weight of my body and then a sharp pain and I know my wrist is fractured. Just getting out of bed and you break bones. So today will be spent at the emergency care getting my wrist taken care of. Just another day in the life with HPP.
A typical day for me is I wake up and I'm slow motion and very stiff in the morning hours. Even if I sleep 10 hours straight; which never happens; At the most I sleep in 4 hour before pain wakes me up, and I have to reposition the 4 pillows I need to support my deformed back. By the time I fall asleep again several hours have passed, and then If I'm lucky I will sleep another 4 hours. I can be feeling really good full of energy and want to accomplish that day. It can start out fine and for NO reason my body will just start to hurt. It's not a muscle ache but more like hot bone pain in a long bone or two. They can hurt so bad you can feel like someone hit you with a 2x4. It can last anywhere from hours to days, and the affected limb can feel like it's broken. There is nothing you can take or do to relieve it except some Non-steroidal medication. The pain can go as fast as it came on with no answers why it happened.
Someone can see you in the morning walking and work and looking fine, and in the afternoon that same person can't believe you can't move. The bad part about Hypophosphatasia is that you look healthy but you are in chronic pain that stops you in your tracks. It's not depression you mind is telling you should be do thing and you want to do them, but your body doesn't respond. One day you can walk a box store just fine with little to no pain and you have no fatigue. The next day or even that same day walking around a mini mart seems like you are running a marathon. You barely have enough muscle strength to get around the store. There has been shopping trips to the grocery store and I have had to leave the cart and struggle to get out to the car because there was no way I could stand in line to check out. There are days I can't lift 2 lbs because the fatigue in the muscles and the hot bone pain is so great, the next day I able to do bicep curls with 10 lb weights. One day you are walking the next couple you can hardly transfer in and out of your wheelchair. One thing for sure is Hypophosphatasia is more than rickets and loose teeth. The sudden pain and loss of muscle strength is unexplainable unless you have experienced it. Average friends and co-workers can never understand how quickly you body can become enable to do the simplest tasks.
Corinna - age 5
We get up in the morning and get dressed. We leave for school which is 2 blocks away with a couple of breaks between the house and school because Corinna's leg hurts. She does good in school but sometimes has to sit out in gym because of her leg. After school is the same, taking little breaks from walking because of the pain in her leg. I usually give her some pain meds to help and then her shot. Sometimes a nice warm bath helps her too.