Suffering With HHD

I know just a little bit about suffering.

I have a disease called Hailey Hailey Disease (HHD). It's very rare, and most people (even doctors) have never heard of it. It's also known as Chronic Benign Familial Pemphigus. It's hereditary and affects families without regard to ethnicity or gender. There's a lot of medical terminology that I could use to explain it, but that's just jargon.

Here is what it means to me. On a daily basis. For a lifetime.

• My skin doesn't heal quickly or normally. Small cuts or scrapes or bug bites usually turn into full-blown sores. Sores that won't heal and usually get infected. I may have these sores for months. Even antibiotics don't help that much anymore. I really believe I've become immune to them. 
• Sweat or stress or friction makes this disease worse. It aggravates the skin and causes it to break down. It splits and tears and blisters and itches, and it damn well hurts!
• The only drugs that REALLY help are problematic for your bones, your liver or cause weight gain. And other body parts that I don't even know about. I've tried lots of different drugs, drugs that require regular blood tests and all sorts of other invasive tests.
• Some of those with HHD swear by vitamins or diet changes. Those things haven't worked for me, although I am glad they have worked for them. I don't think this disease affects everyone the same way.
• Some people suffer all the time with open sores in their groin area or armpits. I usually get it wear my clothes are causing friction ... waistband, bra straps or on my neck (if I make the mistake of wearing a necklace). Sometimes it is on the backs of my legs. It makes it hard to sit down.
• It's painful. It gets infected easily. It may "drain" sometimes.
• It's depressing, and it affects your personal life.
• Clothes can be very uncomfortable. I work in a business office and I'm required to wear business-type clothing. Some days, by 5 p.m., I am literally in tears and the pain is almost unbearable. And I feel like I have a high tolerance for pain.
• It keeps me from exercising like I want to. Again, the sweat causes the skin to break down. And it hurts to do anything sometimes.
• It changes the type of clothes I wear. I have to be comfortable, and I have to hide any scarring. 
• It's very painful. I hate it.
• I do not have it all the time, but maybe 75 percent of the time. I'm grateful for "clear" weeks.

I am not comparing this to HIV or cancer or other life-altering diseases. I know there are many horrible diseases out there that really change or destroy lives and futures. I am just explaining that when you have a disease that is this rare, nobody cares. Not the medical industry or pharmaceutical industry or research firms. Not even family or friends. No one understands the pain. I just want to vent.

I want to be better. I just don't know what to do next.