Joanna

I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally thought it was Marphan’s Syndrome but upon looking at my eyes closer they found out it was Homocystineuria. I was born 10 years after it was discovered in the U.S. and newborn testing was not available at the time. At age 6 my right lens was removed the surgery was brand new then and so I still have some floaters in that eye. My left lens was removed because of a cataract a few years ago, so I don’t have a lens in either eye now, but still see perfectly fine without them. Lenses more are for clarity than anything else. I didn’t used to be able to see the big E but thanks to medications and diet that weren’t available at the time, my vision is almost perfect in the Right eye which is the only one I use.

I also had learning problems from a young age. I had difficulty reading and writing. Teachers spent extra time with me and finally taught me how to write in the sand. I also had a hard time learning to tie my shoes. They threw a party at school when I learned to tie my shoes since I was the last in the class to learn.

At age 12 I was diagnosed with scoliosis, and they had to do surgery on my upper spine to prevent my lungs from collapsing. Although the rod only goes to my mid back, the scar is the full length of my back, but if they corrected my full spice I wouldn’t be able to move.

At about 19 I had a B-12 Problem which caused some balance problems and panic attacks. This is when I was put on Cystadine which helps me to get rid of protein that is trapped in my body. It has a very bitter taste, so I had a hard time finding something to mix it with and finally decided on lemonade. I always liked lemons and they don’t require sugar for me.

I had my first stroke at age 30 on the PCC campus, I have Grand Mal seizures which trigger them, but haven’t had one since 2005. I was 34 at the time of the major stroke which paralyzed my entire left side. Before the major stroke I didn’t believe what my doctors were saying because nobody took the time to look it up and it is so rare. It also helped to have the doctor at OHSU question his students on it. I wasn’t taking my medications or following the diet at that time. I was also under a huge amount of stress because of a job I had just left and another I had just started.

I was told as a child if I followed the diet and took the medications then I would never have gotten the strokes, and I now believe that. In California they just told me to eat a vegan diet, they didn’t have access to the foods that they do now. In most states medical food and formula aren’t covered and formula alone can cost upwards of $500 for a 1 month supply. We are working to change that. Some states only cover formula, some cover foods and some don’t cover either. Here some insurance companies have found loop holes though. Right now with the medical foods and medications my levels are that of someone who has never had the condition. My lowest level is 4 with the Homocystine, but at the time of the stroke it was well over 380. Under 20 is normal for someone who doesn’t have the condition, under 50 is good over 100 is panic time. You would also never be able to tell I had a stroke by looking at me. Thanks to Rehab and what I can remember from CNA classes that my father recommended everything is now back.

I now work for The State Oregon Homecare Commission as a Homecare Worker/ Personal Support Worker I work with those over the age of 65, and those who are disabled on Medicare and Medicaid in their home. I can be trained to do anything that a nurse can do, but most of my employers just want house cleaning and some errands, done they don’t realize all that we can do because we are called homecare workers and not caregivers as the title should be. As a Personal support worker I work with people who are mentally ill or addicted to drugs all are my employers are adults the youngest I have worked with is 30. My work now keeps me busy enough without outside activities, but I used to run a movie group on Face Book and Meetup that does free screenings before they come out in the theaters. They are still available in many areas globally.   As long as I am in Oregon and I am a Kaiser patient, 100 percent of the cost of both food and formula is covered. Some insurance companies have found loopholes though. I had to pay out of pocket for the first year when I switched to medicare it was $500 for formula. I didn’t pay for medical foods at the time and because of the cost of the formula I only took half of what was perscribed.



Other Oregon residents who rely on medical foods

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.