Go Fund me pages. Walks for a cure. Posters. Flyers.
Awareness. That’s what it’s all about, right?
Suffering creates the NEED to talk, and talk LOUD. This is the reason for fundraisers, rallies, and forums: It’s because people have had to fight, and can’t rest until they’ve helped others fight as well. They need to shout it from the rooftops, get on their soapboxes and make their voices heard.
I never thought it would be me. I was always energetic and on the go, but I started to slow down, and eventually came screeching to a halt. I had become extremely sick.
My eyes were shaking so badly that if they were open, I felt motion sickness. I got nausea from noises and light. I had confusion and memory lapses all day; I would forget where I was, what I was doing, and how to perform simple tasks like getting dressed. Talking to people was embarrassing, even talking to people close to me because I’d forget where I was in the conversation, who they were, and anything about their lives. I had migraines so severe I would hold my head and cry because I felt like my head was going to burst open; I would feel bug bites on my skin; I had nerve pain everywhere. Walking was difficult, and forget about climbing stairs. Washing my hair and grooming myself in general became almost impossible. I slept so lightly the softest noise would wake me, so I would get up in the morning feeling hungover and desperate for sleep. I was too weak to get out of bed, or even take care of my three children. My husband didn’t understand why I wasn’t myself. I was totally isolated.
I was terrified. Why? Because no doctors could diagnose it. They said many things: “seizure disorder,” “fibromyalgia”, “tired mommy syndrome” and, my favorite, “it’s all in your head!” I prayed for a name for this disease; desperate for an answer, I would have even taken cancer, or some other horrible condition. I didn’t care. I needed to know what the hell was going on.
One day, I got my eyes checked by a neuro-ophthalmologist. He sent me across the hall to a neurologist. When this miracle worker told me in his soft, Scottish lilt he would not give up until he figured out what was wrong with me, I cried my eyes out and hugged him. He did scans, EEG’s, and every possible blood test until he he finally discovered I had something called Hashimoto’s Encephalopathy (HE). He explained that it’s different from the Hashimoto’s thyroid disease; my body had created antibodies that attacked my brain. There were treatments for this, but no cure. Nevertheless, I was happy there was some light in the dark, abysmal tunnel.
So, fast forward to now. Every six weeks I have multiple blood infusions, and twice every six months I get another type of infusion that lymphoma patients receive. I will probably have these treatments forever, but it’s worth regaining quality of life! I once again have the ability to go out with my husband and have fun with our kids. I’ve also learned to take it easier, slow down, and “smell the roses.”
I am now Vice President of a non-profit organization called HESA (hesaonline.org) for this particular type of autoimmune encephalitis, or AE. We have 5 support groups, a social media platform, and two books that I am honored to be a part of. We support each other and never feel alone!
I am also contributing to a multi-organizational event called “Autoimmune Encephalitis: The Bridge Between Neurology and Psychiatry”- a symposium which will educate the medical community about this progressively diagnosed disease at Cornell Medical School. AE presents in both children and adults with not just neurological symptoms, but psychiatric as well, depending on what part of the brain is being attacked. We have experts in psychiatry and neurology, precious gems, who can diagnose this rare disease. According to research, many psychiatric patients have AE but have been misdiagnosed. They must receive immunosuppressive treatments in order to heal.
So, why advocate for this? Why do I have a fire in my belly to raise awareness for AE/HE? Because I’ve lived that hell. Because I’ve seen adults and children who are catatonic, or comatose, or who have died, and I know people in places who cannot find a doctor who even knows what AE is. I’ve heard many horror stories where someone would get their diagnosis and have hope for a cure, only to be locked up in a psychiatric facility with declining health. Working with HESA and other AE organizations means I am making a difference.
So I am shouting about this disease to the world! I want to raise AWARENESS for what MATTERS and ADVOCATE for those who can’t do it for themselves! I urge you to do the same for what matters to you!