What Lies Beneath: Senior faces wide variety of life-threatening ailments

By: Billie Ann Albert

By just looking around a room full of people you do not know, you could never guess what lies beneath.My life is a constant battle every single day. Now, I know that seems a little more dramatic than it could, but that is just how it is. I have so many health issues that my body fights itself to keep me alive, and not many people know what that is like.

I have a very rare genetic brain defect called Bilateral Periventricular Nodular Heterotopia, or BPNH. In fact, it is so rare that Boston Children’s Hospital tested my parents for the same brain defect for free. Mind you, these tests are $4,000 a tube, and they did two tubes each. It turns out that neither of them have it. Well, my dad has a small “mutation” that is affiliated with the BPNH, but the doctor said that it is nothing to worry about.

There are a couple side effects to this brain defect that I have experienced. I was born with strabismus, a lot like lazy eye, and I have been in glasses since I was three, except for about three years in elementary school. I also have what is called hyperjointism. This means that I am extremely flexible, but only in my shoulders. I am at a high risk for strokes and heart attacks. My vascular system is also weak, and my blood vessels and arteries are fragile, so if I were to get hit hard enough, my blood vessels could break, and I would bleed internally. We all know that would not end well because you cannot put a band-aid on the inside of your body.

This is where I get into the details of my body fighting itself. I have Autonomic Dysfunction, which is basically POTS. It causes me to have a low heart rate and low blood pressure, so I need to constantly drink water and eat plenty of salt, but salt is not good for me considering the fact that I am at risk for heart attacks and strokes.

If I am not eating enough salt or drinking enough water, my blood pressure will lower and lower until it eventually bottoms out. I have a blood pressure cuff that used to come in handy, but I know now when it is low because I can feel the drop in energy and lack of oxygen. You might often see me almost gasping for air, and that just means I am struggling to get enough oxygen.

I basically live in hospitals, and I can direct you to Mayo Clinic in Rochester without a GPS because I make frequent trips there. They have slowed down drastically this last year or two, but I still go there a couple times a year. I have had more blood drawn than any person my age should have. It has gotten to the point where I know exactly what to do at a doctor’s appointment without being asked.

If you think that is all, then you could not be more wrong. I also have a kidney disease that is so rare, it does not have a real name, just numbers and letters. The “name” is c3g, and I take Losartan for it every morning. The problem with these pills, though, is that they lower my blood pressure even more than it already is, so I have to drink even more water and eat even more salty foods.

There are many little “mutations” that are affiliated with this disease, and I have one that no other person has. The BPNH defect cannot be cured, and neither can the c3g, but it can be treated with my pills. I can grow out of the autonomic dysfunction, but I have had it for at least four years and still have not grown out of it.

Sept. 10, 2012 will forever ring a bell in my mind because that is the day that everything changed. I was hanging out with some friends at the park when a little boy threw a branch at me and hit me in the eye. The appointments have been non-stop ever since then.

I have had an enormous number of tests done trying to figure out why my legs would randomly give out on me. I have had tests all way from blood and urine cultures to E.E.G.s, and I have even been in an epileptic chamber for two days.

I used to miss a lot of school, and I was even exempt from gym for a whole year in ninth grade. School has not been as easy as it used to be these last couple of years, but I have learned to cope with it. I have even stayed on honor roll since seventh grade.

My parents do everything they can to keep me from feeling like I live in a bubble, and I would say they succeed. I admit, I do some things that I should not considering the risks, but it has not killed me yet. I would like to think that it is not as bad as it seems, but I think it bothers me in ways that I do not like to admit.