May is EDS Awareness Month
May is the month to spread information and awareness about people living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). At Ology Essentials we are very aware of Ehlers Danlos Syndrome (EDS) as our co-founder Kayla Fioravanti has this genetic disorder and passed it along to her children. There is a 50% chance that a parent with EDS (1 out of 2 chance) that their child will also have EDS. Not everyone with EDS will have the same symptoms or type of EDS—there are 13 different types of EDS!
After her daughter Selah experienced injury after injury over the smallest things Kayla asked all the doctors, “Is this normal?” Doctors kept saying, “It is okay. She is just active.” But so were the kids Selah was playing with when she broke, tore, and fractured one area after another. For a long time, Kayla was only public about her own journey with EDS, but now Selah has decided to start sharing her journey as she gets her training to work in the wellness industry. You can follow Selah’s journey on Instagram. On average it takes EDS patients 10-12 years to be diagnosed. It wasn’t until Selah was diagnosed that Kayla finally got a diagnosis herself after decades of unanswered questions. The same doctor also diagnosed Caiden shortly after. Once one piece of the puzzle fell into place we were able to see the overall image of the puzzle.
The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins. They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation [partial separation of the articulating surfaces of a joint]) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture.
Products We Recommend for Ehlers-Danlos
We believe knowledge is power.
Here are a few resources for those living with Ehlers-Danlos that go beyond our devotion to hemp CBD.
- HEDS Diagnostic Checklist
- EDS Types and Diagnostic Criteria
- About HDS
- The Mighty and Ehlers Danlos Syndrome on the Mighty Facebook page
- 21 Symptoms Kids With Ehlers-Danlos Syndrome Had That Weren’t ‘Growing Pains’
- Genetic and Rare Diseases Information Center
- EDS Today
- EDS Awareness
- EDSers Unite
- Zebras Unite
- Hypermobility Syndromes Association
- Ehler-Danlos Support UK
- Spoonie Life Hacks
- Guide to Living with Ehlers-Danlos Syndrome (Hypermobility Type): Bending without Breaking
- Ehlers Danlos Syndrome Pain & Symptom Tracker Journal
- Zebra Splints
Resources we have found useful that are not specifically for Ehlers-Danlos
- Nambudripad Allergy Elimination Techniques (NAET) for comorbity of Mast Cell Activation Sydrome
- Fit2B.us Experts on Diastasis Recti and careful exercise programs
- Extra Large Ice Pack for Back and Full Body
- Tens Unit Muscle Stimulator
- Kinesiology Tape
- Vitality Bath Bombs, Bath Soak, Massage Oil, Serum, Ointment + Full Spectrum CBD
- Reliefband Sport Anti-Nausea Wristband