The Health “Issues” That Eventually Led to My Diagnosis.
My “Long-Term Care”
Most people have never heard of MPS VI-and honestly, I hadn’t either until it became part of my world. I was diagnosed with MPS VI, 13 years ago, at the age of 32. If you haven’t read my “My Diagnosis” post, here’s the link to get you caught up about my diagnosis. The reason it took 32 years to diagnose me, was because I have an extremely mild case. But knowing what we know now, all my “health issues” growing up makes sense. Starting at 3 months old, I was hospitalized for a week with respiratory issues. Age 9 had my tonsils and adenoids out, and my first set of 9 tubes put in my ears. At 12 years old (6th grade) I was done growing. By age 19 I had emergency gallbladder surgery. Almost went through all of my 20’s smooth sailing, until age 29- where I was diagnosed with severe carpal tunnel, which I had surgery on both hands. I almost forgot to mention, I had a very distinct heart murmur, and cornea cloudiness, which ultimately those were the 2 things, that seemed to be getting worse with age. My first visit with the ophthalmologist, she looked at my eyes, came back with a big book, sat down, proceeded to say “I’m sorry, you have Mucopolysaccharidosis” my first question was “what is that, and am I going to go blind?” I wasn’t going to go blind, but this diagnosis was the start to my MPS journey. I then met with a cardiologist- where I was diagnosed with severer aortic stenosis, she predicted that I would most likely need an aortic valve replacement, but probably not for 10 years, let me just say those 10 years went by fast, December 2023 I had my aortic valve replaced, using the Ross procedure. I am so thankful for my doctors at the University of Washington. My team of specialists include my genetic doctor, cardiologist, pulmonologist, orthopedist, ophthalmologist, neurologist, along with a surgical team. With all that said, at 32 years old, I guess you could say I needed Long-Term Care, because my case is so mild, I am still able to do all the things, I’m one of the lucky ones in the MPS world, but there is no cure, and I will need treatment for life. Although nobody likes thinking about LTC, and we all think that it is not going to happen to us, but reality is that 70% of us 65 and older will need some form of Long-Term Care. I feel pretty lucky, although not fun needing care, but that there is treatment for my MPS IV, (I’ll talk about what that looks like in another post) Because of my diagnosis, is why I’m so passionate about bringing awareness to LTC. What I’m learning is that people carry invisible battles every single day. Some are waiting for answers. Some are learning how to live with a diagnosis. Some are supporting the people they love through difficult seasons. That’s why planning for the future matters so much. Health journeys can change retirement plans, financial goals, independence, and even the roles family members play in one another’s lives. It’s one of the reasons conversations around protection is important, whether it’s health insurance, life insurance, or long-term care planning, it matters more than most people realize. None of us can predict what life will bring, but we can prepare with wisdom, compassion, and a plan.
Never underestimate the value of being prepared for life’s unexpected turns, because tomorrow is never guaranteed to look exactly like today.
I would love to grab a coffee and have a conversation with you.
Tracy DeWaard