Joanna Ball

I was born with a rare genetic condition called Homocystinuria. I was diagnosed when I was 3 years old when I rubbed trisodium phosphate into my eys and the ophthamoligist who was subbing and likely new to medicine happened to notice that my lenses had dislocated. The condition looks a lot like Marfans syndrome, but the lenses dislocate just the opposite. At 12 my lungs had collapsed and I had to have scoliosis surgery which is said to stunt your growth. my mother told me that I grew 2 inches overginght because of the surgery which straightens out your spine. I was home schooled most of my 6th grade year. I also had lots of developental delays as a result of the condition and I useed to be leagally blind. I was not very compliant as a child. It took a major stroke which paralyzed my entire left side to get me to change my ways. It wasn't till I was 48 that I got to know anyone with the condition. I met the executive directior of HCU Network America through a Facebook group called cook for love named after the website mainly for PKU which is like homocystinuria, by diet. We follow a low protein diet and take a medical formuola to replace the protein. I had finally found a group of others that I had found that I could relate to. I was able to gain everything back from the stroke which was my second stroke and I am now a caregiver in my state. I also have a podcast of my own on the Medical Nutrition Equity Act (MNEA) which would mandate healthcare companies to pay for medically necessary foods, vitamins and formula. This is a bill we have been fighting for for over 20 years. I have a YouTube channel that is mostly cooking videos with the low protein foods that I started a little over a year ago. Oregon is one of few states that covers medical foods and formula. The laws currently vary greatly from state to state. The foods are also atleast tripple the price of what you would find in the stores. which puts many in a financila hardship. This is a common theme with almost all of my podcasts.