Meet Ted: Gaucher Disease Patient Journey
In 1963, Ted was diagnosed with Gaucher disease type 1 at five years old. Enzyme Replacement Therapy wasn’t FDA approved until 1991, so Ted spent many years living with this disease and without any treatment. He draws on his experiences to help patients, students and medical professionals see the positives in the worst life can offer. He is a nationally recognized artist, curator, and patient advocate. Here is his story and a glimpse into some of his artwork.
When were you diagnosed with Gaucher disease? Briefly describe the events leading up to your diagnosis.
I was diagnosed when I was about 5 years old, back in 1963. I had severe bone pain, nose bleeds, low platelet count and a very enlarged spleen. I was first misdiagnosed with leukemia because of my high white count then re-diagnosed correctly. My brother was diagnosed soon after.
What has been the biggest challenge for you living with Gaucher disease?
For years it was the fatigue. The pain came and went and caused me to spend years on crutches, but the fatigue was always there and it was immobilizing at times. I would just be too tired to do anything, or I would come home form work or an event and just collapse in the shower or on a bed. I hear other people talk about being tired and I am convinced that what we Gaucher people go through is different. There is something about this type of being tired/fatigued that is painful. It makes life impossible.
After college I got fired from jobs because I just could not think straight. I gave up even trying to have a 9-5 because I knew there would be some days that I would need to sleep or take naps. I have not worked for anyone since 1983. Totally freelance.
Please describe your care team and the impact they have on your life?
My care team right now is one hematologist and one at-home nurse who starts my IV. I used to work with a much bigger team at Cedars but they no longer take my insurance so I had to downsize. I keep up on events and medical advances at patient meetings and online. I like the at home IV better than going into the office.
What are some ways you manage living with Gaucher disease?
I just deal with it. Nothing much I can do. With the enzyme replacement a lot of my symptoms have lessened. I have new hips so I am in pretty good shape. I do have a tendency to brake bones, wrist, clavicle, but otherwise I am good. I swim and do light impact exercise but no running or jumping.
What would you tell someone who has just been diagnosed with Gaucher disease?
That they have a good support network and that there are always people around to answer questions but it is possible that everyone might give different answers. Everyone gets hit with this illness differently. My case was very problematic when I was a child but it is really not too bad now. My brother on the other hand developed Parkinson disease related to Gaucher when he was 47 and died a slow and debilitating death that I would not wish on anyone, friend or foe.
I would also say to anyone younger that is on enzyme and was lucky enough to have missed the worst parts of this illness, stay on your meds. Don’t take it for granted. Your life might be totally altered by taking your good heath and mild symptoms for granted and skipping a few treatments.
Anything else you would like to add?
I feel it is important to always point out that our drugs were developed at NIH using tax dollars. Some of the time our taxes go to worthwhile causes and it is important to keep pressure on local congress and senate members who always want to cut funding. I first went to NIH to give bone marrow for research when I was about 6. I am still part of an ongoing study about the illness that is trying to figure out what genetic markers do what, and also, why my brother developed Parkinson disease and didn’t. I’ve been going there every few years for 51 years. Gaucher or Zika, NIH needs funding.
What makes your Gaucher Disease Journey unique? You! Please share your story with us.