It’s now Autoimmune Disease Awareness Month, and I am happy to help spread awareness. I know that most people have heard the term Autoimmune Disease and many have heard of diseases like Lupus. But, many of the other 100 or so autoimmune diseases aren’t as well-known.
Autoimmune.org is the home of the Autoimmune Association and a wonderful site to help you learn more about these devastating diseases. When the immune system malfunctions and begins to attack healthy parts of the body, that is autoimmunity. Those of us with autoimmune diseases are actually living in a body that is attacking us every day.
Autoimmune diseases often come in clusters. Many people have more than one autoimmune disease, which makes it even harder to treat. The symptoms just pile up and make life a misery. Over my last two decades, doctors have told me that I had or might have at least 5 autoimmune diseases.
So far, I’ve only been diagnosed with Sjogren’s Syndrome. My newest doctor wants me to get tested for Amyloidosis. My dermatologist would have to do a biopsy for that diagnosis. I hope that I don’t have that one, because it’s very serious.
Sjogren’s Syndrome is an awful condition that is known primarily to be a problem for my salivatory glands. They are attacked and so I have very dry eyes and dry mouth. I had to give up wearing contacts and must use many eye drops and gels so that my vision stays clear. Severely dry eyes are also painful and late at night I get headaches if I continue to try to keep mine open.
I take a medication that’s supposed to help with dry mouth. I can’t tell that it’s working, but I’ll keep on it for a while longer. I also take Plaquenil, which is a drug developed to treat Malaria. Doctors don’t know why it works for many with autoimmune diseases, but it does help some of the symptoms. I haven’t noticed that it worked for me, but I stopped taking it not long ago (per doctor’s suggestion) and I realized that it had been helping some with the pain.
I’ll keep taking it because every little bit of pain relief is worth it. Sjogren’s Syndrome doesn’t only cause dry mouth or eyes. It also causes severe fatigue, joint pain, very dry skin, and can attack the lungs, kidneys, blood vessels, digestive organs and nerves. It can also be related to Small Fiber Neuropathy, which I developed around 2018. I have to take Gabapentin to relieve this nerve pain.
Sjogren’s Syndrome also makes a person more prone to developing Lymphomas. My body has Mycosis Fungoides, which is Cutaneous T-Cell Lymphoma. I don’t have enough on my body to receive a diagnosis, but the lymphoma cells are there. I’ve been undergoing phototherapy and using steroid creams to fight this disease.
Do you have an autoimmune disease or know someone living with one? Ask them about their disease, because it’s a great way to learn from a real person and will make them feel cared for. Learn all you can about your disease and advocate for yourself.
@2022, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my opinions and experiences and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.