Between my grandmother with diabetes, my mom who has high blood pressure and has already had a stroke before 40, I have an great aunt with arthritis, a great aunt with leukemia, and I believe somewhere on my mom’s side there’s another aunt with Crohn’s, the point of this is: My family has issues. On the younger spectrum of things I have two cousins who have two different illnesses: Mackenzie (16) has SLE Lupus, and Emmaleah (21) has Hidradenitis Suppurativa.
I asked Macknezie about sharing some of her experience with being diagnosed with SLE Lupus, her reply was a snippet from her own personal blog, “After almost a year of not knowing what was going on with my body I found an answer I got diagnosed with SLE Lupus. But, the process of getting there was very hard. After spending month after month, week by week sometimes in and out of the doctors office the hospital and still no answers. But, my PCP said she wasn’t going to give up and sent me to ever specialist possible and they kept telling me oh it’s just erythema multiforme the rash got so bad at one point I was hospitalized for almost two weeks it reached my eyes, mouth, my whole body. First, I got sent to a dermatologist which was a waste of time I walked in and wasn’t in the back for more than five minute and he just said oh it’s erythema multiforme because he had read over my history, then I was hospitalized again and had to see an gastroenterologist. I was in constant pain after many of procedures still had no answer. Then I went to a neurologist because I was having on going migraines. Finally, after things just kept getting worse and it was a recurring rash and symptoms that came with it I went to a rheumatologist and they took blood work and found that I had SLE Lupus. Now I’m not saying since now I know things are easier but I can truly say I had a weight lifted off my shoulder when I finally knew what was going on with my body and got information on it and the right treatments started to help subside the discomfort and symptoms. SLE Lupus is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue. It can affect the skin, joints, kidneys, brain, and other organs. Lupus does not yet have a cure but they are able to treat symptoms .Lupus is often hard to diagnosis they say because there is only one single laboratory test that can diagnosis it and often you can have false positive so it takes longer. Now there is more than one kind of lupus Cutaneous or “skin” lupus, Drug-induced lupus, and SLE Lupus or some may call it systemic Lupus they all have different symptoms and can be caused by various things.”
I asked Emmaleah what she would want to tell people about her disease to which she emailed me her words about living with HS. Emmaleah says, “Hidradenitis Suppurativa is a chronic skin disease. Most of you probably don’t know what it is. I never knew what it was until I was diagnosed a little over 2 years ago. I’ve had it for about 5 years now, and it’s not just something you can get over. Medically speaking, it’s an auto-immune disease where painful bumps show up, normally around the sweat glans. (i.e) Armpits, inner thighs, under breasts. It’s considered as one of the most difficult and chronic diseases of dermatology. It cause significant pain, discomfort, disfigurement, anxiety, depression, social isolation and/or can cause permanent disability and reduce the quality of life. So many people are unaware that I have it. I never show the pain, I always hide the bumps. I’m too ashamed to wear tank tops, or a bathing suit. I absolutely love swimming, but I downgrade myself to wearing a shirt and shorts when I go. It’s not something that can be cured, although there are life-long treatments. I was on three different medications for it. An antibiotic pill, an acne cream and some other type of formula that I had to use twice a day, everyday. I have to be careful when I take a bath or shower, scrubbing any of the places too hard can rupture the wound and make the pain substantially worse. I always thought that I was the only one who had this disease, I felt like such an outcast wherever I went. I could never really be “normal” because of it. For me, it’s one of those things that I never let people know. The only people who did were my mom and the doctor. It took forever to gather enough courage to tell my best friend what a horrible body I had. ”
Both of them are extremely sweet people and I thank them dearly for speaking out about their illnesses. Awareness can never be overlooked for anything, you never know who out there is suffering symptoms without knowing the cause and may be able to identify with myself or other guest writers on my blog.