Imagine living with a condition that no one can see but feels impossible to ignore. That’s been our reality. For years, we struggled with symptoms that didn’t seem to add up—unrelenting pain, fatigue, dizziness, and more—only to be told it was “all in our heads.”
My daughter, Ella, faced severe complications with POTS before finally being diagnosed with Ehlers-Danlos Syndrome (EDS), and my own diagnosis didn’t come until I was 49, after decades of being dismissed by doctors. This isn’t just our story; it’s the story of so many others living with Ehlers-Danlos Syndrome, a condition that’s not as rare as you might think—it’s just rarely diagnosed. That’s why we’re here, sharing our journey with EDS and advocating for change, because awareness can make all the difference.
Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that affect the body's collagen, the protein that provides structure and elasticity to skin, ligaments, blood vessels, and organs. The most common symptoms of EDS include chronic widespread pain, extreme fatigue, stretchy skin, joint hypermobility and instability, as well as bruising and poor wound healing. There are also possible co-occurring symptoms from GI issues to heart rhythm irregularities. With 13 different subtypes, each person’s experience with EDS can look a little different—some may struggle more with joint pain and instability, while others face vascular issues or internal organ problems.
For many of us, EDS is an invisible illness, meaning it’s not something you can see by just looking at someone. This makes it incredibly difficult for those who live with it to be understood or believed. For Ella and I personally, being dismissed by the medical community for so long was frustrating and isolating, and we know that many others face the same hurdles.
That’s why raising awareness about EDS is so important—not just for those who live with it, but for the medical professionals who may misdiagnose or overlook it. When people are aware of the signs and symptoms, they can get the help they need sooner, and better understand what others might be going through. We’re passionate about educating as many people as possible because we believe EDS is not as rare as it seems—it’s just rarely diagnosed. Our journey with EDS has become our mission to spread knowledge, spark compassion, and advocate for those whose voices often go unheard.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissue in the body, specifically collagen. Collagen is essential for maintaining the strength and elasticity of the skin, joints, blood vessels, and internal organs. In people with EDS, the body either produces faulty collagen or not enough of it, leading to a variety of symptoms and complications that vary greatly between individuals.
There are 13 different subtypes of EDS, each with its own unique set of symptoms. Some of the most common subtypes include:
Hypermobile EDS (hEDS)
This is one of the most common subtypes accounting for about 90% of EDS cases. Symptoms include joint hypermobility, chronic pain, and frequent dislocations or subluxations. Skin may be normal or slightly stretchy. Fatigue is also a key feature with a variety of other symptoms and related conditions that affect many different areas of the body.
Although hEDS is currently classified as a rare disorder (1 in 3,100–5,000 people), the true prevalence of hEDS is not known and may certainly be underestimated.
Classical EDS (cEDS)
Classical Ehlers-Danlos Syndrome is characterized by skin highly elastic skin, skin fragility, and atrophic scarring. People with this subtype may also have joint hypermobility as well as joint instability.
Vascular EDS (vEDS)
A more severe subtype, this form affects the blood vessels and internal organs, leading to an increased risk of ruptures and life-threatening complications. It is marked by thin, translucent skin and easy bruising.
Kyphoscoliotic EDS (kEDS)
This subtype presents with severe muscle weakness, scoliosis, and hypermobility, especially in the spine and joints, leading to significant mobility issues.
Arthrochalasia EDS (aEDS)
Characterized by severe joint hypermobility, frequent joint dislocations, and loose, easily damaged skin. This subtype is extremely rare.
Dermatosparaxis EDS (dEDS)
A very rare form with highly fragile skin that is prone to bruising, tearing, and scarring. Individuals may have joint hypermobility but generally have less pain than others with EDS.
Other Subtypes
These include Classic-like, Periodontal, and more. Each has its own distinct characteristics, but all are part of the broader family of EDS types that share collagen defects and similar symptoms.
Common Symptoms of Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome (EDS) presents with a wide range of common symptoms that primarily affect connective tissues, such as joint hypermobility, skin abnormalities, and chronic pain. Beyond these hallmark features, there are numerous co-occurring symptoms that can impact multiple systems in the body, including the gastrointestinal, cardiovascular, and nervous systems.
Joint Hypermobility
Many individuals with EDS are able to hyperextend their joints far beyond the normal range of motion.This can lead to frequent dislocations, sprains, and joint instability.
Chronic Pain
Pain with Ehlers-Danlos Syndrome often stems from joint instability, as hypermobile joints frequently subluxate or dislocate. Muscle pain is also common, as muscles work overtime to compensate for weak connective tissues. Nerve pain can also be an issue due to compressions or repetitive injuries. Additionally, headaches and migraines, particularly those associated with cervical instability or temporomandibular joint dysfunction (TMJ), are frequent.
Skin Issues
The skin may be exceptionally soft, often described as having a silky or velvety texture that feels unusually smooth to the touch. The skin may also be hyper-elastic, stretching beyond normal limits, or incredibly fragile, tearing or bruising easily even with minor pressure or injury. Slow wound healing can also be an issue, leaving behind thin, paper-like scars.
Fatigue
Chronic pain from joint instability, frequent dislocations, or muscle strain can be physically and mentally exhausting over time. Additionally, many individuals with EDS experience conditions like Postural Orthostatic Tachycardia Syndrome (POTS), which affects blood flow and can lead to dizziness, weakness, and extreme fatigue. Sleep disturbances, such as insomnia or poor sleep quality caused by discomfort or pain, further exacerbate feelings of tiredness.
Internal complications
Connective tissue weakness can lead to organ prolapses, such as rectal, uterine, or bladder prolapses. These occur when weakened support structures allow organs to shift or descend. Other potential complications include gastrointestinal issues like gastroparesis (slowed stomach emptying) or hernias due to fragile connective tissue. Vascular EDS, one of the most serious subtypes, carries the additional risk of arterial rupture or organ perforation.
Other Issues and Symptoms of Ehlers-Danlos Syndrome
While connective tissue-related symptoms like joint hypermobility and skin fragility are the hallmark features of EDS, many experience additional symptoms that can complicate daily life and overall health. These co-occurring symptoms are diverse and may range from cardiovascular issues to nervous system dysregulation.
Fast Heart Rate
Many individuals with EDS experience an increased heart rate, often linked to conditions like Postural Orthostatic Tachycardia Syndrome (POTS), which can cause a racing heart upon standing.
Low Blood Pressure
Low blood pressure is another frequent occurrence, leading to symptoms like dizziness, fatigue, or fainting, especially when transitioning from sitting to standing.
Temperature Dysregulation
Difficulty maintaining a stable body temperature is common, with individuals feeling excessively hot or cold without environmental changes, often due to autonomic nervous system involvement.
Sweat Dysregulation
Abnormal sweating patterns, such as excessive or insufficient sweating, are linked to dysautonomia, a frequent co-occurring condition in EDS.
Heart Palpitations
Individuals may feel their heart skipping beats or beating irregularly, which can be both alarming and uncomfortable.
Fainting/Feeling Faint
Syncope (fainting) or near-fainting episodes can occur, particularly with sudden postural changes, due to blood flow issues.
Dizziness
Chronic dizziness, often related to POTS or other autonomic dysfunction, can significantly impact daily activities.
Cold Hands/Feet
Poor circulation or vascular involvement in EDS may cause extremities to feel cold, even in warm conditions.
Migraines/Headaches
Severe headaches and migraines are frequent in EDS, often linked to cervical instability, muscle tension, or vascular issues.
Mast Cell Disorders
Dysregulated mast cells can lead to allergic-like reactions, such as rashes, swelling, or anaphylactic symptoms, even without known triggers.
Gastrointestinal Issues
Digestive problems like bloating, constipation, diarrhea, or gastroparesis are common, reflecting EDS's impact on connective tissues in the GI tract.
Anxiety Disorders
Research suggests that there may be a physiological connection between EDS and heightened anxiety due to dysregulation of the autonomic nervous system (dysautonomia).* This can cause physical symptoms like a racing heart, dizziness, or shortness of breath, which mimic or trigger anxiety responses.
Sleep Disturbance
Pain, discomfort, or autonomic issues often disrupt sleep, leading to fatigue and reduced quality of life.
How is EDS diagnosed?
Diagnosing Ehlers-Danlos Syndrome (EDS) involves a combination of clinical evaluation, medical history review, and, in some cases, genetic testing.
The first challenge in getting an Ehlers-Danlos diagnosis is finding a physician familiar with EDS. Although any doctor can technically diagnose EDS, you will probably need to find a doctor who has a personal interest in EDS to get a diagnosis.
There is a general lack of awareness and expertise about EDS among healthcare professionals. Many doctors are not familiar with the latest diagnostic criteria or may only be aware of the most common manifestations, such as joint hypermobility and skin elasticity. This can lead to underdiagnosis or misdiagnosis, as symptoms may be attributed to more common conditions.
Other medical providers are often quite good at identifying patients with EDS. Physical therapists are often the first to notice that a patient has hypermobile joints. Hypermobile joints or being “double jointed’ is one of the red flags for Ehlers-Danlos Diagnosis.
Steps You Can Take to Prepare for a Physician Visit
Getting an official diagnosis is not always easy. You will need to keep records of your issues and symptoms, and seek out a physician that is knowledgable about Ehlers-Danlos. Unfortunately, many in the medical community are not adequately up to date on EDS. Stay persistent. Stay positive. Join a support group for recommendations and advice.
Gather Your Medical History
Start by compiling a detailed medical history, including any symptoms of joint hypermobility, skin elasticity, easy bruising, and other EDS-related symptoms you've experienced. It's also helpful to gather any relevant family medical history, as EDS can be hereditary.
Document Your Symptoms
Keep a record of your symptoms, including when they began, their frequency, and how they impact your daily life. Photos of visible symptoms (like skin elasticity or scars) can be useful, but don't push your body beyond its limit in order to meet the criteria. This documentation can be really helpful when communicating with healthcare professionals.
Seek Referral to a Specialist
Primary care physicians may not have the specialized knowledge required to diagnose EDS, so ask for a referral to a specialist. Depending on your symptoms, you might be referred to a geneticist, rheumatologist, or another specialist familiar with connective tissue disorders.
The Ehlers-Danlos Syndrome Diagnosis
The physician will need to assess symptoms and consider any family history of connective tissue disorders. Clinical diagnostic criteria, like the Beighton Score for hypermobility, are often used, particularly for hypermobile EDS (hEDS), which lacks a genetic marker. For rarer subtypes, such as vascular EDS (vEDS), genetic testing can identify specific gene mutations, like COL3A1.
These tests confirm a diagnosis and guide management strategies. Diagnosing EDS can be particularly challenging due to its overlap with other connective tissue disorders, requiring thorough evaluation by specialists, such as geneticists, rheumatologists, or dermatologists.
Medical Classification for the Ehlers-Danlos Syndromes
The 2017 International Classification for the Ehlers-Danlos Syndromes proposes specific criteria for diagnosing different types of EDS. For hEDS, the criteria include generalized joint hypermobility, systemic manifestations of a more generalized connective tissue disorder, and a family history, among others. Your specialist will evaluate whether your symptoms meet the criteria for an EDS diagnosis.
Clinical Evaluation
The physician will conduct a thorough clinical evaluation, which may include a physical examination to check for common EDS signs, such as hypermobile joints (using the Beighton score as a guide), skin hyperextensibility, and other related features.
Medical and Family History
Review of medical and family history: To identify patterns or symptoms that align with EDS or related hereditary disorders.
Genetic Testing
For some types of EDS, genetic testing can confirm a diagnosis. This involves taking a blood sample to look for mutations in specific genes associated with EDS. However, for the most common type, Hypermobile EDS (hEDS), there is currently no genetic test available, so the diagnosis is based on clinical criteria.
Tips for Navigating the Ehlers-Danlos Syndrome Diagnosis
Be Persistent: Seeking an EDS diagnosis can be frustrating and time-consuming. Persistence is key.
Seek Support: Connect with EDS support groups and communities. They can offer advice, share their experiences, and provide emotional support.
Educate Yourself: Learning about EDS can help you advocate for yourself throughout the diagnostic process.
Living with EDS
Living with Ehlers-Danlos Syndrome (EDS) can feel like navigating an unpredictable and exhausting maze. Day-to-day challenges often revolve around managing chronic pain, fatigue, and injuries.
Dealing with an often invisible illness can also lead to feelings of isolation, frustration, and being misunderstood, particularly when symptoms are dismissed or minimized by others, including medical professionals. Anxiety and depression are common for both physical and mental reason.
Living with Ehlers-Danlos Syndrome (EDS) has shaped so many aspects of our lives, from how we approach day-to-day challenges to how we’ve built our brand, OOF! Like many people with chronic illnesses, we’ve learned that looking and feeling your best can go hand in hand. When you live with persistent pain, fatigue, and other symptoms, maintaining a simple beauty routine isn’t just about appearance—it’s about boosting your mood and confidence.
Our journey with EDS is what drives us to create products that make life a little easier, a little more beautiful, and a lot more manageable. We know firsthand that small acts of self-care can have a big impact, and our hope is that OOF! inspires others to embrace their own version of beauty, resilience, and self-expression, no matter what challenges they face.
There is No Cure, But Here’s How EDS Can Be Managed
While there is no cure for Ehlers-Danlos Syndrome (EDS), there are strategies that can help manage symptoms and improve quality of life. For many, physical therapy is a cornerstone of care, focusing on building strength in the muscles that support hypermobile joints and improving overall stability. A skilled physical therapist familiar with EDS can design a low-impact, tailored exercise program to minimize strain on connective tissue while enhancing mobility and function.
Pain management is another essential aspect of living with EDS. Chronic pain can be addressed through a combination of approaches, including medication, topical treatments, and complementary therapies like acupuncture, massage, or TENS (transcutaneous electrical nerve stimulation).
Lifestyle adaptations are often necessary to prevent injuries and accommodate the body’s unique needs. Bracing, taping, or using mobility aids can provide joint support and stability, reducing the risk of dislocations or overuse injuries..
Vitamin C plays a crucial role in collagen synthesis, making it particularly important for individuals with Ehlers-Danlos Syndrome. Adequate vitamin C intake supports the activity of lysyl hydroxylase, an enzyme essential for stabilizing collagen molecules. Some studies suggest that high-dose vitamin C therapy may aid in wound healing and muscle strength improvement for EDS patients.**
Additionally, vitamin C supplementation is recommended to reduce complications of skin fragility and promote wound healing in individuals with EDS.***
While vitamin C cannot cure EDS, ensuring sufficient intake may help alleviate certain symptoms and enhance overall connective tissue health. Staying hydrated and maintaining balanced nutrition can also help mitigate fatigue and support overall wellness.
Raising Awareness and Advocacy
For many of us, EDS is an invisible illness, making it sometimes difficult for those who live with it to be understood or believed. For Ella and I personally, this was years of injuries, fatigue, dizziness, prolapses, and G.I. issues with no explanation. We were dismissed by the medical community for so long, and we know that many others face the same hurdles.
That’s why raising awareness about EDS is so important—not just for those who live with it, but for the medical professionals who may misdiagnose or overlook it. When people are aware of the signs and symptoms, they can get the help they need sooner, and better understand what others might be going through.
Our journey with EDS has become our mission to spread knowledge, spark compassion, and advocate for those whose voices often go unheard. We want to raise awareness for the Ehlers-Danlos Syndromes to foster empathy and reduce stigma. Advocacy begins with sharing accurate information, highlighting the diverse ways EDS impacts individuals, and emphasizing the importance of early diagnosis and support.
How You Can Help
Supporting the Ehlers-Danlos Syndrome (EDS) community can take many forms, each making a meaningful difference. One impactful way is through direct support of organizations like the Ehlers-Danlos Society. Donations help fund vital research, education for medical professionals, and resources for individuals and families affected by EDS. Volunteering your time or skills can also contribute to these efforts, whether it’s assisting with events, spreading awareness through social media, or joining local advocacy campaigns.
Another way to help is by supporting businesses like OOF! that raise awareness and contribute to the EDS community. Every purchase not only supports a small, family-run business but also helps amplify the message about EDS, with dedicated proceeds going toward advocacy efforts or organizations like the Ehlers-Danlos Society.
On a personal level, encouraging understanding and inclusivity in your daily life can have a profound impact. Taking time to educate yourself about EDS and being empathetic to the challenges faced by individuals with invisible illnesses can make a world of difference. Every conversation and act of support helps build a more accepting and informed society.
Resources for Individuals and Families
Navigating life with Ehlers-Danlos Syndrome (EDS) can feel overwhelming, but there are a wealth of resources available for guidance and support. Reputable organizations like the Ehlers-Danlos Society offer comprehensive information about the condition, including educational materials, research updates, and practical tools for living with EDS. Accessing medical journals or expert-led articles can also provide the latest insights into managing symptoms and understanding advancements in care.
For emotional and social support, joining online communities or local support groups can be invaluable. These spaces offer a chance to connect with others who understand the challenges of living with EDS, share experiences, and exchange advice. From Facebook groups to forums hosted by nonprofit organizations, there are many platforms dedicated to fostering connection within the EDS community.
As a brand created by individuals living with EDS, OOF! exists as both a business and a mission. We’re here to simplify beauty routines, empower confidence, and help others find joy even amidst chronic challenges. Together, with your support, we’re spreading awareness, contributing to research, and building a future where EDS is not just understood, but fully recognized and supported.
Thank you for taking the time to learn about Ehlers-Danlos Syndrome, for your empathy, and for being part of this movement for change. Let’s continue to advocate, educate, and support each other—because together, we can make a real difference.
Citations
*Ishiguro H, Yagasaki H, Horiuchi Y. Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review. Front Psychiatry. 2022 Jan 11;12:803898. doi: 10.3389/fpsyt.2021.803898. PMID: 35087434; PMCID: PMC8787077.
**Elsas LJ 2nd, Miller RL, Pinnell SR. Inherited human collagen lysyl hydroxylase deficiency: ascorbic acid response. J Pediatr. 1978 Mar;92(3):378-84. doi: 10.1016/s0022-3476(78)80423-5. PMID: 416188.
***Do, T., Diamond, S., Green, C. et al. Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes. Curr Nutr Rep 10, 324–333 (2021). https://doi.org/10.1007/s13668-021-00373-1
Thank you so much for sharing. I haven’t been diagnosed but 99% sure I have hypermobile EDS. I have so many of the symptoms. This really helped me a lot and I really appreciate you sharing your story and the info!!