With a rare disease such as medullary thyroid cancer (MTC), finding support can be difficult.
I was 10 years old when I began a daily regimen of 30 mg of prednisone taken orally. This is how I’ve started each day for the last 17 years.
There are several things I would have done differently after my alpha1-antitrypsin deficiency (AATD) diagnosis. I did have a great doctor, but there were certain things I wish I had realized were so important. I once heard someone else with AATD say: “Nothing about respiratory illness is straightforward.” While this is true, so much can…
As a patient with Duchene muscular dystrophy (DMD), I understand how vital testing is in the care process since this disease impacts several muscle systems.
At 26 years old, I was diagnosed with having an extremely rare genetic disease, Pompe disease. This is a disease not many know much about.
For healthcare professionals treating patients like myself with medullary thyroid cancer (MTC), the focus is on treating the actual disease.
I expected my physician to at least have the dignity to research Pompe disease privately, instead of in front of me.
When it comes to medullary thyroid cancer (MTC) treatments and how to apply them, I believe there are many different approaches and viewpoints.
I am very fortunate to have all of my natural teeth. No, not because of any genetic propensity; I have all of my natural teeth because I knew about trigeminal neuralgia. Trigeminal neuralgia is a condition that produces brief episodes of severe facial pain and is found in about 4%-6% of people with multiple sclerosis…
At age 34, with the less severe form of AATD, SZ, I cannot walk or run for more than 20 minutes a day anymore.