Our EDS Mission
Our mission is to raise awareness about Ehlers-Danlos Syndrome, share our personal journey, and support education and advocacy. Together, we strive for understanding and meaningful change.
Our Journey with EDS
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.”
Hi! This is Annaleise. My daughter, Ella, and I are the founders of OOF! We suffer from Ehlers-Danlos Syndrome (EDS). Ella faced severe complications with POTS before finally being diagnosed with 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—perhaps 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.
What is Ehlers-Danlos Syndrome?
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.
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—but 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 are the signs and symptoms of EDS?
Ehlers-Danlos Syndrome (EDS) is a complex condition with a wide range of symptoms that can vary greatly. Common features include joint hypermobility, chronic pain, and fatigue, smooth or stretchy skin, and poor wound healing. People with EDS often experience additional issues like dysautonomia, mast cell disorders, or gastrointestinal problems, which are referred to as comorbidities.
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These comorbidities and the variability in symptoms make EDS challenging to diagnose and manage. While some may struggle primarily with joint instability, others may face significant cardiovascular, neurological, or immune-related complications. This diversity highlights the need for awareness, tailored care, and a compassionate understanding of the unique ways EDS affects each individual.
How is Ehlers-Danlos Syndrome Diagnosed?
Diagnosing Ehlers-Danlos Syndrome (EDS) involves a combination of clinical evaluation, medical history review, and, in some cases, genetic testing.
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The first challenge in getting an Ehlers-Danlos diagnosis is finding a physician familiar with EDS. 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.
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Other medical providers are often the first to identify 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.
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The physician will 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.
Raising Awareness and Advocacy for EDS
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 Family
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.