Osteoporosis in the Young: Interview with Alice
We will be interviewing Alice V. Roberts, a courageous lady who has had osteoporosis since she was very young. Alice will take us through her journey with osteoporosis and its many difficulties.
Alices’ Bio: I was diagnosed with severe osteoporosis in 1991 at the age of 35, by doctors at the Mayo Clinic in Scottsdale, AZ. In 1980 I had a complete hysterectomy because of severe endometriosis and did not receive any hormone replacement therapy (HRT). At that time doctors did not know early surgically induced menopause could lead to osteoporosis if there was no HRT. As I broke bones I was asked to admit I was being abused and could be placed in a “safe house” with my daughters. In 1991 doctors at the Mayo Clinic in Scottsdale, AZ diagnosed me with severe osteoporosis and I finally had an answer to all my fractures.
In Washington, D.C. in the capitol, I have spoken in the offices of Representative Ann Kirkpatrick, Senator Jon Kyle and Senator John McCain. In 2009 I spoke in Dallas, Texas for World Osteoporosis Day. I have spoken at health expos and done talk radio in Phoenix. I am one person trying to make a difference and prevent others from going through what I have been through. It is painful and debilitating. Osteoporosis needs more public attention.
Welcome Alice Reading your biography is so much like reading mine. I know that young people get osteoporosis too, but most think it’s an elder disease. I was diagnosed at 32 and you were at 35. Since you’ve been dealing with this for a long time you have insight into bone loss that would be different than those newly diagnosed from menopause in their fifties or sixties. We hear about young girls, in high school, with similar stories but they aren’t on the six o’clock news, so we need to get this information out to help those who are surprised they have osteoporosis. Your book, Living Day to Day with Severe Osteoporosis-2012 Update, advocacy work and interviews will help so much to spread the word on osteoporosis in the young.
Q: Did anyone in your family have osteoporosis? Heredity is a major cause for osteoporosis, so I’m curious if this was the case for you?
My mother, grandmother and great-grandmother had osteoporosis and stooped posture. My mother had to buy blouses two sizes larger to accommodate her dowager hump.
Q: Since you had a total hysterectomy, at an early age, do you feel this was the cause of your fractures and bone loss?
In 1980 I had a complete hysterectomy at age 24 due to severe endometriosis. Because of bad migraines I was unable to tolerate hormone replacement therapy (HRT). At that time doctors did not know that early surgically induced menopause could lead to osteoporosis if there was no HRT. The National Osteoporosis Foundation did not even exist.
Q: How many fractures did you sustain, and which would you say was the worst, or hardest to recovery from due to limited mobility and recovery time?
Doctors at the Mayo Clinic in Scottsdale, AZ have told me I have had over 50 osteoporosis related fractures. My worst fracture was a right tibial plateau fracture (which is the weight bearing bone. I was in the hospital for five days, then in bed for eight weeks, followed by two weeks in a wheelchair). Next I used a walker and then a cane. To this day I must use a cane. To put any weight on the leg for the first eight weeks would have meant never walking again. Six months of physical therapy followed all that. Because my bones are so porous when they put the first screw in during surgery it went right through the bone and out again piercing the nerve and to this day there is a numb area on the leg. Twelve weeks later all the hardware was removed to prevent nerve damage.
**Q: Due to your many fractures, the authorities thought you were being abused; was this very difficult to handle, given the implications of this for your husband, children and yourself? **
Every time I went to the hospital the doctors said if I would admit to be abused they could place me and my daughters in a “safe house” but I denied being abused. When I left they said I would be back and I was. We went through the same question period each time and each time I denied abuse.
Having done Forteo previously, I will begin another 2 year course starting in 2013. I have tried so many medications over the years with no success. Reclast infusion was the last medication I used and after three years there has not been much improvement. I was not getting worse but I was not getting better. At age 57 I have the bones expected of as woman in her 90’s.
Q: Are you now on a supplement and weight bearing exercise routine, and do you need to be very careful with your choices of exercises to prevent further fractures?
I do take calicum and vitamin D supplements and also weight bearing exercises. In the summer I have a pool and do water therapy. I am not allowed to lift over five pounds. My left hip has been fractured the last two years and had to heal on its own since my bones are too porous for hardware. My left hip gives out often and when it does we have to call “911” and be transported. I may feel like I can get up but because the bones are so fragile medics can lift me carefully. If I try myself I could end up with a fracture that could be avoided.
Q: You do wonderful advocacy work for the National Osteoporosis Foundation (NOF); do you find that there are still many people who feel that osteoporosis is reserved for older women?
I speak to groups. It is interesting because they, a friend or a family member has just been diagnosed. They want initial information but then they are done. They go in to denial. And yes, they believe it is a disease for the elderly but are slowly coming around. Osteoporosis is just beginning to get the recognition it needs in the past few years. But due to the economy people put off bone density testing which could provide valuable information for prevention and slowing down the onset of this disease.
Q: What do you tell your daughters to help prevent osteoporosis, and are you concerned they may inherit this?
My daughters are very aware of osteoporosis. Their primary care doctors are aware and make sure they take calcium and vitamin D to slow down the on-set. And when they were expecting babies calcium was increased since it is taken from the mother for development.
Q: You’ve written a successful book on your life with osteoporosis; do you think this is helping to bring awareness to women and men who might never think about this disorder?
I certainly hope so. My mission is to help draw awareness, increase education and encourage prevention. If it helps one person it was worth writing. I do not want others to go down the road I am on. I have had many emails with positive feedback. Many say they feel they’re reading about themselves.
Q: Are you now at a stable bone density level, or do you still have to be careful with the amount of weight you lift?
I am very unstable. I have to watch what I do physically. And when the “big break” happens with the left hip I will be in a wheelchair because a hip replacement is not an option. My bones are too thin for hardware.
Thank you Alice for an informative interview on osteoporosis, in the young!
Alices’ contact info: firstname.lastname@example.org
Pam wrote for HealthCentral as a patient expert for Osteoporosis.