Patient Stories

My name is Travis Scida and I’m a 28-year-old from Saint Mary’s Pennsylvania. 

I was 12 years old when I was diagnosed with idiopathic hypoparathyroidism and my symptoms began a year prior. 

I remember getting quickly winded while doing light exercise and experiencing unbearable fatigue and lingering brain fog. I pushed through my episodes of tetany for months until one night after basketball practice, I started to feel ill. 

The last memory I have of that life changing night is that I was walking to the bathroom to get a shower and then everything went “black”. Fortunately, my mom was home and heard me collapse in the shower. She rushed to get me out and called 911. After waking up from a major seizure, I found myself at Children’s Hospital in Pittsburgh. I was hospitalized for two weeks as my calcium levels were found to be extremely low (4.8mg/dl) and it was discovered that my parathyroid glands were inactive. 

When getting admitted to Children’s Hospital, doctors struggled to not only get my calcium level up but also my potassium. At the time the kidneys seemed fine, but I already had basal ganglia calcifications on the brain due to unstable calcium and phosphorus levels. I believe this contributes to my brain fog today. 

Once my Doctor found my levels to be stable with the right medication, they discharged me. My treatment until the arrival of natpara consisted of only calcium, calcitriol, HTCZ and occasionally potassium supplements. Going home I truly thought to myself I was cured if I just took my pills and had a proper diet. I learned very quickly that was not the case. 

I have endured many calcium crashes and emergency room visits due to the nature of this disease. Even with good blood results, I felt awful, and it got to a point where I accepted feeling terrible as the new normal. Having low calcium every day is like having a bad flu that never goes away. 

As a kid there were some nights I was scared to go to bed because I didn’t think I would wake up if I did. Brain fog, body aches and tetany from hypo Para is something I don’t wish upon my worse enemy.  

On calcium and calcitriol, every good day was followed by 10 bad ones. A bad day for me was not being productive and cancelling anything I had planned. I couldn’t exercise, socialize with friends, or even go to school or work. During my adolescent years my parents would bring me to the hospital when I had a calcium crash. All they would do is tell me to take more Tums and I will be fine. Clearly the lack of knowledge of Hypo Para in an emergency department is stunning. 

I didn’t realize how inadequate the handling of my treatment plan was until 2012 when I developed nephrocalcinosis and stage 2 kidney disease. At this moment in my life, I was beginning to lose hope and my mental health began to decline. This eventually led to me being diagnosed with anxiety and depression where I received outpatient and inpatient care on occasions. 

To an outsider I may appear to be a healthy individual that lives a normal life. However, I think this may be deceiving 
because people don’t realize the struggles I’ve been through and continue to face. Hypoparathyroidism is not a one size fits all illness because every case is different and requires a unique approach. 

Natpara became available in 2015, but I was hesitant due to the black box warning. But after a year, I realized I didn’t have a choice and had to try it. Natpara made my calcium levels more stable but I still had wild fluctuations in both urine and blood. With my doctor’s permission, I decided to go to 2 injections (off label). This helped stabilize my levels more, but I still had hypercalciuria. I had higher energy and felt more like myself than I did in a long time. I still remained worried that my kidney disease would worsen if I did not correct my hypercalciuria. 

With my natpara treatment going well, our life-saving drug suddenly gets recalled. With no other pth options,I knew going back to calcium and calcitriol would worsen my kidney disease. I was in a panic and started to look for second opinions.

I found a new doctor who started me on an off-label Omnipod pump with Forteo. I have been on the pump for over a year and it has been life changing for me. I experience minimal fluctuations in calcium and my kidney function has been stable. My urinary calcium level has stayed within range for the first time since childhood. Pump technology for hypoparathyroidism requires more investigation, but it has changed my life for the better.