I’ve had a few people say to me “at least you don’t have cancer” including my husband.
I’m so glad I don’t have cancer, it’s an evil disease that doesn’t care who it attacks, young or old. Nearly everyone knows someone with cancer. Getting a diagnosis feels like being given a death sentence. Even those that survive never really recover.
The treatment for cancer is brutal with many side effects. Sometimes it works, sometimes it doesn’t. It attacks different parts of the bodies so all cancers are different.
Cancer has taken far too many people too soon, destroying families. Survivors live with the knowledge that it can strike again at any time. Survivors also often suffer with Post Traumatic Stress Syndrome.
Cancer took my Mum, two of my sister-in-laws and my nephew. Cancer wrecked the first few years of my friend’s little boy’s life. I have friends with cancer. I hate cancer, I really do.
I’m glad I don’t have cancer.
At Least You Don’t Have Stiff Person Syndrome Plus PERM
I’ve never said to anyone ‘at least you don’t have Stiff Person Syndrome plus PERM.’ Probably because the answer would be like ‘huh?’
When you say cancer, everybody knows what you mean. They know that it’s awful and it can kill, and often does. They know how dreadful the treatments are. Most people know someone with cancer, it’s so common.
Stiff Person Syndrome plus PERM (SPS+) is incredibly rare. Less than one million people in the entire world have it. It can take around seven years to diagnose and most Doctors have never heard of it. It can also be a sign of cancer.
SPS+is so rare no-one knows how to treat it, not even the specialists. Drugs have been used and some found useful. Most drugs are not prescribed because the condition is so rare they are not registered for it.
The drugs I take for my SPS+ are classified so my partner has to go to a regular chemist to pick them up where they know him. If he has to go somewhere else he needs to show identification.
My drugs have many side effects that can make me extremely tired, sick and dizzy. They can also affect my heart and memory.
I go to hospital for treatment every month. Not in stages, but every month for two years now and probably for as long as I’m alive. I don’t get tests to see if it’s worked because it can’t cure me, just help me from getting worse, and maybe make life a little easier for me. The treatment can cause headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia. It can also cause acute renal failure and thromboembolic events as well as aseptic meningitis. (which I’ve already had.)
I have pain all the time, I can’t walk without aid, and then only for very short periods. I get vertigo and have absence seizures. Most of the time I just want to sleep. I have spasms that can affect any part of my body and that can be so severe they break bones. (So far, just ribs for me.) The spasms can also affect internal organs, including my heart and lungs. Each severe spasm feels like I’m dying.
There is no cure, there is no proven treatment. Most people have never heard of it. I’m in pain constantly, I could die at any time and my medication has just as many side affects as the ailments it’s supposed to be treating.
Yes, I’m lucky I don’t have cancer.
And, you are so lucky you don’t have SPS+