Why I Acknowledge Rare Disease Day

Today, February 28th, is dedicated to spreading the awareness about rare diseases that impact people all over the world.

This is a day that people and patient organisations from all over the world holding awareness-raising activities, and with this year's theme being research. According to the Rare Disease Day website, a rare disease "is any disorder that affects a small percentage of the population."

The reason I choose to do spread awareness is not just for the many families who are dealing with rare diseases, but because I am someone was diagnosed with a rare disease also.

Some call it a disease and others call it a disorder, but when I was about 3 months old I was diagnosed Precocious Puberty by a doctor in Jacksonville, Texas and then again at 6 months at Children's Hospital in Dallas.

My mother told me when I got older that the doctors in Dallas laughed at my original doctor in Jacksonville, because they thought he was dumb for thinking I had this disorder. They told him that he "would never see a case like this in his lifetime because it is so rare". They aren't laughing now.

Precocious Puberty is when a child's body begins "changing" too soon, according to Mayo Clinic. Puberty that begins before girls turn 8 and before age 9 in boys is considered precocious puberty. For me, it was very early. I was one of the youngest to be diagnosed at Children's Hospital in Dallas, Texas, according to my mother.

There are multiple causes for this disease, but it is very difficult to pinpoint the exact cause. It could be just a hormone issue from the pituitary gland in the brain, which was my cause. Others have been linked to a tumor in the brain. The honest answer is that it is so rare it is difficult to know all the answers and reasons why.

According to Children's Hospital, 90 to 95% of the patients diagnosed with precocious puberty never get a conformation of the cause.

My treatment involved monthly Lupron injections up until I was at the appropriate age for a child to begin puberty. According to RXList, the lupron injections would cause "dizziness, weakness, tired feeling, hot flashes, night sweats, chills, clammy skin, nausea, diarrhea, constipation, stomach pain, skin redness, skin itching or scaling, rash, joint or muscle pain". I can only imagine how my mom dealt with me as an infant dealing with these symptoms. Not just that, my mother was a single parent and those monthly visits to Dallas are not cheap. Plus, I didn't just have the one diagnoses. I also had asthma and allergy issues.

Now I am dealing with the aftermath from my treatments. I am barren and battle with hypothyroidism. I am also discovering more and more symptoms that are strange and unusual, but are almost identical to other women who have endured the same treatment and diagnosis as I have.

Women who used Lupron a decade or more ago to delay puberty or grow taller described the short-term side effects listed on the pediatric label: pain at the injection site, mood swings and headaches. Yet they also described conditions that usually affect people much later in life. A 20-year-old from South Carolina was diagnosed with osteopenia, a thinning of the bones, while a 25 year-old from Pennsylvania has osteoporosis and a cracked spine. A 26 year-old in Massachusetts needed a total hip replacement. A 25-year-old in Wisconsin, like Derricott, has chronic pain and degenerative disc disease. -according to Christina Jewett, Kaiser Health News of PBS

I am currently in the process of trying to reach out to the doctor who diagnosed me almost 23 years ago at Children's Hospital in Dallas. So far I haven't had any success but I am still trying.

This is just my story when it comes to the awareness of rare diseases. I am just one person dealing with my own health issues when there are tons of people all around the globe doing the same thing. Today I ask that you take a moment and visit RareDiseaseDay.org and spread some awareness for the cause.