T.J.) ‘Hello’ Ms. Bloom. Thank you for agreeing to answer my Fast Five questions for our Ehlers-Danlos Syndrome (EDS) awareness month article. Our community at The Unchargeables is made up of people with chronic illnesses, many of which are rare or rarely discussed. Many suffer with chronic pain with or without known causes. And many in our community are undiagnosed and still looking for an accurate diagnosis to explain their symptoms.
Q1.) What are the first symptoms an individual with Ehlers-Danlos Syndrome might notice?
L.B.) Usually there is pain. The pain can be relentless. But sometimes for others it may be mast cell, gastrointestinal, neurological or autonomic symptoms. It is always hard to give a ‘usual’ presentation as it is such a complex set of conditions with multisystemic symptoms. Firstly, there are 14 different types that all present differently. Secondly, within those types there is a vast spectrum. Like the zebra – no two people living with EDS have the same stripes.
T.J.) The Mayo Clinic describes Ehlers-Danlos as a “group of inherited disorders that affect your connective tissues – primarily your skin, joints, and blood vessel walls” and lists symptoms as stretchy skin or hypermobile joints; which doesn’t sound that bad. In reality EDS can actually be quite serious and life-impacting. Much more information is available at www.ehlers-danlos.com but I struggle to give what I call my elevator pitch when people ask: What is Ehlers-Danlos?
Q2.) In a minute or less, how do you explain Ehlers-Danlos Syndromes?
L.B.) The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. Additionally there are a range of multisystemic comorbidities that can occur such as gastrointestinal, autonomic, neurological issues and more! People with the condition live on a vast spectrum. Pathways to early diagnosis, management and care need to improve.
T.J.) I mentioned to you that I suspect my hypermobile teen daughter may have EDS. She was diagnosed with POTS and autonomic dysfunction as well as hypermobility, which some research links to Ehlers-Danlos syndrome. Yet, I have had a difficult time getting an accurate diagnosis. One doctor even said, “There’s nothing that we can do if you have it so it might be better for you not to know.” One doctor agreed to order a blood test but the insurance denied it and by the time I agreed to pay out of pocket they had disposed of the sample. I know we’re not alone in these types of problems. There seems to be a systemic failure to diagnose and treat EDS. Healthcare systems vary widely across the globe and with that in mind…
Q3.) What advice do you have for a person who suspects they may have Ehlers-Danlos Syndrome?
L.B.) Diagnosis is obviously the ideal but more important is the management of the symptoms. Keeping as mobile and active as possible is key to living a better quality of life with EDS and the comorbidities. Often it is through a holistic approach such as diet, exercise and movement, mental health support, and ways to target pain. When you have a symptom you should address that specifically and treat what is there rather than what could be. Not everyone suffers with the same symptoms so it is important to focus on the complications you live with.
T.J.) I am a firm believer that any one individual can make a positive impact in the world. The Ehlers-Danlos Society, which is now recognized as the international authority on EDS awareness, advocacy, and activism, began with one woman’s mission to connect with others. Today social media connects us in new and different ways. Online communities make it possible for individuals to establish new relationships, share resources and gather information much more quickly than in the past. We call our little community The Unchargeables. There’s this whole battery analogy our fearless leader, Natalie, came up with. Essentially we have faulty batteries so we run low on energy. We call ourselves the Chargies.
Q4.) How can people in our community of Chargies help spread the word about Ehlers-Danlos Syndrome and what would you want them to say?
L.B.) They can visit our website and use our free resources such as leaflets, posters, presentations etc. When we are all promoting the same message, using the same terminology, the correct information will get out there. Spread awareness through your own social media platforms and use our hashtags to help the word go viral!
T.J.) Friends and family do not always know what to do or say when they find out someone has a rare, complicated, serious, or even just strange sounding condition. What often comes out is unintentionally hurtful. One of the themes in our support group is “What Not to Say to a Chargie.” Sometimes I can’t believe what I hear! Sharing our hurts helps us remember we aren’t alone. Hopefully it’s a fun way to help advocates and allies learn language that is inappropriate, too.
Q5.) What is your “Lara Bloom’s Ehlers-Danlos What Not to Say to a Chargie?”
L.B.) Don’t say it is in our head. Don’t make us feel bad when we can’t go out or socialise or help around the house. Don’t say it will get better one day. There is no cure for EDS; getting ‘better’ takes hard work and requires support, understanding and patience and we can have good days and bad despite trying our hardest to stay strong.
Thank you for taking the time to answer my questions. We hope this reaches many people and helps increase awareness.
Following is a Fast Five Facts from www.ehlers-danlos.com and other sources as listed.
Fast Five Facts: Ehlers-Danlos Syndrome
1. Current estimates indicate between 1 in 2,500 and 1 in 5,000 people have some form of Ehlers-Danlos Syndrome (EDS) although some advocates say it’s closer to 1 in 1,000.
2. Worldwide over 1.5 million individuals have been diagnosed with EDS.
3. EDS is a genetic condition and a genetic specialist is the most likely to make an accurate diagnosis.
4. According to one Harvard Health Publishing report it takes between 10 and 20 years for patients to get an accurate diagnosis (Kiesel, 2017).
5. There are 13 subtypes of EDS and knowing which one you have is important for many reasons include family planning and preventative care.
About Interviewer T.J. Madden
Reader, Writer, Baker, Teacher, Chicken Soup Maker, Fighter for all things Healthier, Stronger, Kinder, and Better than yesterday.