Posted: 5:23 am Wednesday, February 28th, 2018
By Ann Kelly
“But you don’t look sick.”
Someone that deals with a rare illness can hear that a lot. That someone is me. I’ve talked about my journey with Systemic Lupus with you before but today I want to share a little more with you. Today is Rare Disease Day. What makes a disease “rare?” In the US it is something that will affect 1 in ten people and the sad fact is half of those are children. Lupus has some many symptoms and syndromes and there are times when even I lose track. But it was something I didn’t even know I had that had me flat on the floor in the hallway outside my studio one morning and off to the ER. Antiphospholipid Syndrome was causing my blood to clot and triggered what is known as a TIA – what I now know what a blessing in disguise. Not a stroke, but a strong warning that something was wrong. Quite a few tests later I found myself on a blood thinner, most likely for the rest of my life. But I’m grateful each and every day that it wasn’t worse.
Over the last year many of my anti-inflammatory meds stopped working so now it’s Benlysta, the first drug that was developed specifically for Lupus. I’m just completing what they call the loading doses through an IV. After this it’s once a month. It’s a very expensive drug and like other companies there is a program that will pay the majority of the cost…if you qualify. And from what I hear from others also on this drug it can be an incredible battle just trying to do that. I won’t go off on a health care rant, but let’s say I’ve learned a lot about what works and what doesn’t. And I will always have to be and will be my best advocate. The worst side effect so far has been incredible fatigue to the point where it feels like all I want to do is go home and stay there. Some days I do and I’ll never make excuses for the way I feel. It’s an opportunity to educate. So please feel free to ask me whatever you’d like in total confidence at firstname.lastname@example.org. But please make sure you speak with your doctor when you have questions and concerns about your health care first.
There’s someone else I’d also like to introduce you to. I met the Valenti family through one of our walk for the Arthritis Foundation some years ago. Mary and Tony are two of the strongest parents I’ve ever known, and their daughters Ashley and Lindsey are incredible with all they’ve had to deal with. But it’s Ashley’s journey with Arthritis and Crohn’s disease that is taking a toll. Mary gave me permission to share their story and invite you to join #TeamAshley. I have! Please take a moment to read what Mary shared recently and join us for the upcoming Arthritis Foundation’s Walks. I look forward to meeting you soon and sharing my story. Rare Disease Day may be commemorated today, but the disease itself is for a lifetime.