I'm not going to lie, this is going to be difficult for me to write about because I don't usually talk about this topic with people, even though I should. And it's 4:30 in the morning so bare with me. I just think people need to be informed about an issue that affects me every day.
I was born with Ichthyosis, a rare genetic skin disorder. It is where you make your skin every other day instead of every 8 days (approx.) like a normal person. This means my body is constantly producing new layers at an abnormal rate. For instance, if I get a cut, it might be almost healed in a couple days where most people it would appear a lot longer. Also, hair is considered a "bamboo type." It grows in shoots like bamboo which cause it to break off more easily. I was born with only a 10% chance of surviving, and it took years to even diagnosis the disease correctly. Ichthyosis is not something you would know could appear in your child. Both of my parents have a recessive gene for the disease, meaning they had no idea and were rather confused when I came out. I was kept in a hospital immediately after birth for months and wasn't allowed to come home permanently almost a year later. My mom spent the majority of her life in the hospital trying to figure out what was wrong. They later found out it would be a 1 in 4 chance of their child getting it. I got it, while my younger brother, born on my fourth birthday did not. A lot of treatment is trial and error, and I believe my condition was worse when I was younger because I had no input in what was being done to me, and doctors were so unfamiliar with me. My entire childhood I went to hundreds of doctors, missed school in hopes it could lead to beneficial research to them. I later realized they couldn't help me. I would go into an appointment optimistic hoping a doctor would have a better lotion for me, and the entire time he would just ask questions to gain knowledge for himself. I hated it. I didn't understand why I knew more information than they did. After years of that, I gave up. I haven't been to a dermatologist in years, while most others go every month. I don't see the point anymore, and doctors just frustrate me and make me lose hope.
It only affects less than 200,000 people in the United States. I know, that number might seem high, but to compare, cancer affects 1.5 million people EACH year and equal to 1,500 deaths per year. Let's just say what I have is something you probably won't ever come across again. Because of this, there is little research. I have always relied on my parents for information up until recently I got annoyed that they knew close to nothing, and have been spending hours on the Internet trying to find some kind of modern information. I found nothing. Literally, nothing. Google it...it's pretty sad, honestly. The problem is people are so unaware of disorders not constantly discussed about. People donate to organizations all over the media such as cancer. You can just walk into a store and find loads of "pink" products to buy in which will support cancer research. It makes sense though. Cancer impacts more people, it is more lethal, it is more in your face. If I had a lot of money, I'd probably donate to them too. Why donate to organizations so far behind and extremely rare? I don't have a good answer except that you have to start somewhere. My parents made me think negatively from the start on this one. They told me it is so in need of funding that barely any research is even being done anymore because doctors are so focused in finding cures to more commonalities. Doctors get discouraged with the lack of support. Think about it, when you ask an aspiring doctor what they want to do, what do most say? "I want to find the cure to cancer!" But like I said, it makes sense. And I don't blame them at all. It's hard to think about the fact that if our organization could even have 3% of what other organizations make, maybe there could have been a cure by now. At the same time, it's frustrating to not have anywhere to turn, and nobody to ask aside from yourself. I think for that reason it has made me purely rely on myself for any medical problem. I never go to the doctor for anything, unless I really think I'm dying.
It's not like one of those disorders in which you can treat, and maybe it'll go away someday. You can't just see doctors, take a pill, pray to God, and it will go away. It's not like that at all. You can't have a surgery or buy a lotion to fix it. You can't control when you get infections or constant illnesses so extreme it is painful to walk. You can't escape the rigorous, painful, daily morning routines you can't skip even for one day. It is common to get a lot more bacteria in your system. Bladder infections, ear infections, overheating, difficulties getting blood drawn, high heart-rate, exhaustion, depression, anxiety, are all common additional factors people experience on top of this disorder. It is probably why I have had Ecoli more than three times, and a recent kidney problem, along with extreme versions of common illnesses such as severe strep and even chicken pocks (which I was both hospitalized for). Simple sicknesses can easily turn into deathly infections. But I never treated myself as any different than anyone else. I believe I can do anything anyone else can do. While others think they shouldn't exercise to do overheating, I work out as a solution to the frustration I get from all of this. I don't consider it unbearable to any degree, and honestly I wouldn't notice it very much if it weren't for other people noticing it for me. I'm so used to it by now it doesn't phase me, and I'm used to the fact that there isn't anything I can do to change it. It is like trying to change your brown eyes to blue. My parents have never treated me any different, were never over-protective at all, and forced me to do everything any other kid was doing. At times that was really difficult, but looking back I'm thankful because I was included in normal activities and have no regrets. I was able to play sports and have a normal social life. I was blessed in that area, and have always been able to maintain great friendships which means the world to me.
The only products out there to help are pretty dangerous steroids which are really not worth the end result, and is hard to keep track of. I think it's easier just living life how it's meant to without having to constantly monitor pills and doctor appointments. Despite my negativity for the treatment to my disorder, I think I am optimistic in how I live my life. I don't change anything. I still go out when I'm in pain, and I won't let anyone know. I'm not the type to just stay at home in misery, or let people feel sorry for me at all which is why I don't usually talk about any of this. When strangers come up to me curious, I don't even tell them the truth because I don't want anyone worrying. It's hard to explain it where people will understand; people jump to conclusions, offer to call the paramedics, give me phone numbers to their so called "life-saving" doctors, tell me stories in which they believe relate to me, baby me, or mistake my disease for carelessness and lack of protecting myself. I remember when I was younger people would come up to my parents and yell at them thinking they did not take care of me. I think the worst feeling of this whole thing is the guilt. I hated that feeling more than anything. I wanted to yell at them for even accusing such a thing. It doesn't matter when people come up to me, but when they drag others down with me, that's when it gets to me. I hate when people have to tell me their hour-long stories when all I'm trying to do is shop with my friends. I hate when people make stupid remarks, I let it go, but my friends feel like they have to be mean back to them for me. I appreciate it, but I can handle it. It's easier to let it go sometimes even though there are many times where I would just LOVE to just punch them in the face instead of answer all of their repetitive questions.
I think I've spent too much of my life being in denial. I want to use what God has given me to help others. To help inform instead of ignore and hope it'll just go away. Because it won't. I'm going to be stuck with it forever, so I might as well make the best of it. I can't even begin to blame anyone or feel sorry for myself. I don't think I'd have it any other way. Today I was talking to someone similar to me and read an article she wrote describing the disease as "chronic." I asked her why she considered our disease chronic and she told me it is because it is considered being long-lasting and recurrent or characterized by long suffering. To me, I never ever defined it as chronic. To me, that makes it seem deadly, and a hinderance on your entire life. I don't believe Ichthyosis is a long suffering. That just sounds morbid to me. It's more of a blessing in disguise. I can't bring myself to consider it that serious after I see people with much more painful endeavors. I can't bring myself to complain about it because in the back of my mind I know it could be a million times worse. I'll admit sometimes I've asked God, "Why me?" out of frustration and discouragement, but I know God has given me something this tough for a reason, and I know he wouldn't have given it to me if I couldn't handle it. I find peace in the trust he has blessed me with. I can't question his reasoning. I can't ask him why was I chosen instead of my brother. Everything is for a reason. He gave me the gift of ambition, writing, and concern for others. And I want to put all of those to use as much as I can. Without Ichthyosis, I would not have been able to meet the MANY inspirational people I have. Camp alone has made it worth it for me. Meeting kids with diseases a billion times worse than mine makes me feel like an idiot for even thinking what I have is a problem. Some of those kids are just amazing. Their smiles never fade, their ambition and strength is more than I have ever seen. It keeps me holding on during the tough days. I just think of them and think if those little kids can get through severe pain every day, I can get through a moment. It's worth feeling low self-esteem at times, discouraged, and down even if I can help one single person.
I want to be completely open about this now because I think I've been too closed off for way too long. I'm sorry for not discussing it before. I want anyone to feel free to comment or ask any questions!