The Ehlers-Danlos syndromes are a group of connective tissue disorders. In most subtypes, the genetic origin has been identified, but in the hypermobile subtype, and in hypermobility spectrum disorders, the genetic cause has not yet been discovered.
This lack of genetic marker has left a lot of patients (and I’m sure clinicians and researchers, too) frustrated and adrift. It was brought to my attention recently with a Wall Street Journal article called “The Unfulfilled Promise of DNA Testing,” which discusses a similar issue for a little girl with a misidentified genetic condition (not EDS related) and the struggles she’s faced. (Apologies if you hit a paywall, but it was a really good story!)
The article makes a really good point, that while genetics have done a lot of good for a lot of people, we’re still in the early stages of understanding, and genetic testing isn’t (yet?) the universal panacea many hoped it would be. There are still a lot of unanswered questions.
But as patients of genetic conditions, I think it’s important for us to be as knowledgeable as possible about genetics. Both of its benefits and shortcomings. So in this post, I’m listing resources I’ve found that have helped my understanding!
Free Online Courses
If you’ve read a lot of my website, you’ll know I’m a huge fan of FutureLearn.com! They offer a huge variety of online courses developed by some of the best colleges and universities around the world.
You do have to create an account to take the courses, but the account is free. Most courses are free, too, with the option to pay to upgrade to access extra features. Some courses are paid only, and I will indicate them below
Most courses run multiple times, so if you miss one start date, you can catch it again down the road. These are the most interesting one’s I’ve found:
The Genomics Era: the Future of Genetics in Medicine by St. George’s University of London (FutureLearn.com)
Myths and Realities of Personalised Medicine: the Genetic Revolution by USNW Syndey (FutureLearn.com)
Food as Medicine: Food and our Genome by Monash University (FutureLearn.com) – PAID ONLY
Using Personalized Medicine and Pharmacogenetics by the University of East Anglia (FutureLearn.com)
Whole Genome Sequencing: Decoding the Language of Life and Health by NHS Health Education England (FutureLearn.com)
Videos
Some videos covering the basics of genetics!
National Geographic
TED-Ed
Hank Green (and friends)
Articles
Introduction to Genomics – National Institute of Health National Human Genome Research Institute (Genome.gov)
Genetic Disorders – University of Utah Learn.Genetics Genetic Science Learning Center
YourGenome.org – Wellcome Genome Campus