First, A Necessary Disclaimer:
Obviously, I am only a mom of a child with EDS – I have no medical training whatsoever and any advice or information I give should be considered as exactly that: friendly, but not medical, advice. I can share what I know from our own journey and my hope is to give you a place to start as you work with medical professionals to seek out the proper care. Beyond that, every EDSer is unique and no treatment is right for every person. Treatment must always be customized to the individual, so what works for one, may not work for another. That being said, we can help one another learn as we fight a common enemy.
We Are All In This Together
I know many folks who visit this blog may be looking for answers to specific questions and may not find quite the information they are looking for amongst the many, many posts. I well remember the days of endless internet searches in a desperate attempt to find information that would arm me in the battle against EDS and want to help anyone else in a similar situation.
After almost two years of blogging and seeing various internet searches that bring visitors to my blog, I have long wondered if there was a way to reach out to those folks who are in need of a way to ask questions. My first advice is always to join one of the forums for EDSers – the EDNF Inspire message boards, the UK Hypermobility Syndrome Association’s forum or the forum on prettyill.com, (particularly helpful for those who have questions about the Driscoll Theory) are all great resources for asking questions and getting answers. These will give you access to others who may have answers from personal experience and I highly recommend them for a source of knowledge and support.
Introducing “Ask A Question”
Beyond those excellent resources, I have decided to create pages covering various EDS topics and invite readers to ask a question in the comments section of the page that fits the topic they need information on. I will do my best to answer any questions posed, and, if my readers can shed light on a query, they would be welcome to share their own experiences.
If you have a question, just use the drop down menu to look for the page that your question best fits in and ask your question in the comments section. And don’t worry if you aren’t sure where your question belongs, just put it somewhere.
In the comments section for this page, feel free to make suggestions about any topics you would like to see added to the list of topics or make suggestions on how I can improve the process. I feel most comfortable answering questions which I have some personal experience with, but will consider adding additional topics if there is a need. Again, I welcome the input of anyone who has knowledge to share.
[Note: This is an experiment that I have no idea how it will work. If it works well, great. If not, I will either remove the pages or try something new. Also, depending on how it goes, I may copy questions and answers to a FAQ page to make the format easier to access, periodically deleting those comments.]