A Sudden Change

At 50 years old, I was a healthy, strong workaholic – until everything changed. The last time I’d seen a doctor was when I was in my mid 20s. When I reached 50, I began to have pain throughout my body, in my muscles, joints and bones. After a couple years it got to the point where I could not walk. I sought out a doctor and received many x-rays, nerve tests, and MRIs. Ten doctors later I was told that there was nothing wrong with me and that I was getting older and could not deal with the pain that typically starts when you get into your 50s.

Not knowing much about the medical field but being a fast learner, I realized I had not seen an orthopedic doctor yet. So, I made an appointment, got x-rays, and within minutes they found out I had two fractured femurs. The fractures were straight across at the ball of the femur. I was told that I needed emergency surgery and that I would need rods placed in my femurs so they would not break any more. For the next three months, even more pain caused the doctor to recommend a hip replacement. While trying to remove the rod in the right leg, he broke my femur all the way to the knee, forcing him to stop the hip replacement – off to find another doctor.

The Progression of Pain

The next stop on my journey was to the University of Michigan. I saw the chief of orthopedic surgery and in the next few months I had the two femur rods removed and a new hip implanted. After that, it was time for physical therapy, two hours every day. My back was hurting and my ribs started with a lot of pain. I kept hearing the phrase “no pain, no gain.” But the pain would not go away. I continued to see other doctors and received CAT scans, more x-rays and more MRIs. I got 20 shots in my back over the next couple months, only to be told I needed more therapy. The doctors could not find anything and suggested an implanted spinal cord stimulator to trick my brain into thinking I wasn’t in pain. The next year of my life was the worst yet; the stimulator caused even more pain in my back and ribs.

Throughout all of this I became depressed and was on medication for depression, which I was against, but was told I really needed it. All the pain and continued therapy made me think dying was the only way out. By this time, I was convinced that I was crazy and I would have to live like this for the rest of my life.

I went to see even more doctors and now they did a bone scan; I had to be put asleep while doing the scan due to too much pain. When I woke up I told my wife I thought they dropped me because there was still more pain in my back legs and ribs. For the next few days, I was in so much pain that it was the first time I refused to do therapy. I could not move there was so much pain. I went to another hospital system and after a week in there they ran more tests, only to find out I had 10 broken ribs, fractured ribs, femur and some breaks in my spine. From there I went back to the University of Michigan and the bone specialist started running more tests.

A Lifesaving Catch

It was seven years and 100 doctors later and there was finally proof that I had all those broken bones. At that point, the bone doctor sent me to an endocrinologist. The endocrinologist ran some blood work and found that I had a rare disease, Tumor-Induced Osteomalacia (TIO). They found the tumor right away because it was the size of a silver dollar. It buried itself in my left scapula.

“Today, I am much better; I still have some broken bones, but I go next month to see how my bones are and look forward to continued improvement. I was lucky to find a doctor that knew about TIO because I was slowly dying a painful death. This is why I am willing to talk about this disease and help raise awareness.”

Tumor-Induced Osteomalacia (TIO)

What is it?

Tumor-induced osteomalacia (TIO) is a rare disease caused by tumors.

What causes it?

TIO is typically caused by slow-growing tumors, which produce excess amounts of FGF23, a protein that regulates phosphate and vitamin D, both of which are important for bone health.

What are some of the common symptoms?

  • Muscle weakness
  • Fatigue
  • Bone pain
  • Fractures

How many people have it?

Approximately 500 – 1,000 people in the U.S. are living with TIO.

Common names for TIO1

  • Oncogenic osteomalacia
  • Oncogenic hypophosphatemic osteomalacia

1Oncogenic osteomalacia. National Institutes of Health: Genetic and Rare Diseases Information Center Website. https://rarediseases.info.nih.gov/diseases/9652/oncogenic-osteomalacia. Updated October 19, 2017. Accessed March 29, 2019.

If you are aware of any Tumor-induced Osteomalacia (TIO) groups, please contact patientadvocacy@ultragenyx.com.