Kelly’s Story

This was written in response to the HypoPARA Association asking for experience stories to bring to the FDA so that more funding for research and treatment development can come about.

Hello, my name is Kellie. I am 56 years old and have been healthy and active my entire life. One year ago I was diagnosed with hypoPARAthyroidism due to a total thyroidectomy. My surgeon never really discussed the possibility of losing my parathyroid glands and the effect it could have on my life.

Everyday is a struggle in one fashion or another. On days that I have energy I get tetany, brain fog or one of the other numerous symptoms. Then the guessing game of whether it is high calcium, low calcium, high or low magnesium. A good day of activity means 2 - 3 days of fatigue and additional supplements. 

I think daily about how this will affect my life in the future. I now have psoriasis which I believe is directly related. The thought of calcium deposits scare me.

I struggle to accomplish a 40 hour work week. When my day is over I have nothing left, therefore my personal life is falling apart.

Monthly Labs, supplements, prescriptions, doctor visits. Financially I am drained, soon I will be seriously looking at selling my house.

I usually don't share any of the issues or resolutions with anyone since people really don't understand. This includes my doctor, who is basically learning from me. I have learned to become my own advocate on how to handle this disease. I am however extremely grateful for the support of the few para groups that are out there. They are the one source that I can turn to.

I will continue to get up everyday and pray that someone will hear our cries for help. A monitor, a pill, awareness, education. We are standing still with this disease. Please let's move forward.