5 Things I'm Tired of Hearing About Ankylosing Spondylitis

Hello, and welcome to The Ankylosing Spondylitis Podcast. Can you believe that this is almost the end of 2019? Man this year has just flown by. It's been a really, really interesting year for me from the great highs with this show, the great numbers that have come in and the positive feedback I've got from everybody about liking the show, to going from highs like that to dealing with the passing of my father in August and the whole dynamic that created for me. I know I'm grateful for the almost 75 years that he was around and he was here for me. So that was fantastic, but I’m not going to lie. It still stinks to you know, I want to call him. Even though he didn't have Ankylosing Spondylitis, he and my stepmother listen to all these episodes, and were two of my biggest cheerleaders for these episodes. It’s fantastic to know the years that I had with him.

So with that, on to the show. Now for the Question of the Week, this is going to be a little bit different because I happened to be online and I saw a posting from a fellow AS person in Australia named Tieran Brownlee. He posted an article, now I'm going to butcher this so up front, I apologize, but it is from the xinhua.net, and I'll have a link to it. So don't try to write any this down. It was dated December 7, 2019 and it says Scientists uncover potential nuclear of “bamboo spine”, otherwise known as Ankylosing Spondylitis. So here in Taipei, team of scientists from Taiwan uncovered how the human gene HLA-B27, triggered Ankylosing Spondylitis, which might lead to symptoms of bamboo spine, leading them to find a promising new cure for the disease. Can you believe that? The words Ankylosing Spondylitis and potential promising cure don't even seem like they should be in the same paragraph. So a collaborated research team led by a Dr. Lin Kuo-i with Genomics Research Center of the Academia Sinica in Taiwan, and they found the gene HLA-B27, triggers a miscoded protein response, and then a series of abnormal signal transduction, which eventually causes an isozyme called “tissue-nonspecific alkaline phosphatase” (TNAP) to be highly activated. The elevated tip was demonstrated to be the cause of bone like cell formation around a person’s spine, the research team sent a press release. So that's the extent of the article I'm going to read. There will be a link in the show notes to it and I would encourage everybody to read it. It really caught my eye because farther down you'll see that researchers have found that two existing medicines that are already out there to treat items may be possible cure for Ankylosing Spondylitis. So they may have stumbled across something. As they look at this, we don't know. It's from China. It's not anything that's apparently maybe cleared through the FDA. So it could be years and years and decades away. We don't know. But it's definitely an interesting article to read. So I hope you all go out and read that article, and I'll have a link to it.

Now, on to the main topic of today, this week, as I was looking through some ideas about what to do for the show, I happened to be going through one of the Ankylosing Spondylitis forums online and I saw some people talking about you know, I hate it when somebody says this, right I hate it when somebody says that in relation to Oh, my back is bad or Yeah, I had AS but I cured it. You know, people say the craziest things to you. I generally like to think the best of people in that they aren't trying to be mean or be off putting their generally trying to be helpful. They just realize they're not being helpful. They're actually being a pain in the rear sometimes.

So I have to come across this article by Ricky white. That name sounds familiar. I did an interview with Ricky few months back for the show. He has Ankylosing Spondylitis. And the last episode, we talked about his book called Taking Charge -...