Hello Everyone! Most of you know me as William Raphael from the 2 SAPHO Syndrome Facebook groups. The support and advice given to me via those groups has been a godsend throughout my personal SAPHO journey, but I felt we needed and deserved more. On top of that, I wanted to give back to a worldwide community that has given me so much. So I’m extremely excited to introduce to you all a side project I’ve been working on for a little while now, Saphoforum.com!
It is a website where we can not only have categorized discussions, but they will be archived and searchable. I will always be thankful I had our Facebook groups, but as a web developer I began to see the limitations of the Facebook group structure when I wanted to search for specific information on a medication or symptom and couldn’t. This essentially destroys the ability to have an archive of information for this disease. I feel an archive, especially of our discussions, is necessary. I consider this especially true due to the lack of guidance and correct information available for newly diagnosed individuals.
Over time, I have noticed that this lack of structured content leads to the same basic questions being asked quite often in the groups, especially when a new person joins, because they are desperate for information. I thought it through and came to the conclusion that a forum would be the perfect solution to these problems as everything we say, all the advice everyone gives, and all the words of encouragement we receive will be saved and searchable. When someone specifically makes a post asking a question, they can also mark a reply as the solution to their question, immediately showing that post at the top of the discussion so anyone finding it later on can immediately see what the creator of the post deemed as the solution/best reply.
I hope you all enjoy the forum and if you have any suggestions like new category ideas, or see something wrong please don’t hesitate to make a post in the site feedback category or send me a private message!