Our EDS Mission
Our mission is to raise awareness about Ehlers-Danlos Syndrome, share our personal journey, and support education and advocacy.
Our Journey with EDS
Imagine living with a condition that no one can see but feels impossible to ignore. 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.
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.
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.
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.
What are the signs and symptoms of EDS?
The most common features of Ehlers-Danlos Syndrome (EDS) 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.
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The variability in symptoms make EDS challenging to diagnose and manage. Some face significant cardiovascular, neurological, or immune-related complications.
This 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 under-diagnosis 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 an EDS diagnosis.
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The physician will assess symptoms and consider any family history of connective tissue disorders. For hypermobile EDS (hEDS) the Beighton Score is used. Genetic testing can be used to identify some of the subtypes.
Raising Awareness and Advocacy for EDS
For many of us, EDS is an invisible illness, making it difficult for those who live with it to be understood or believed. Ella and I were dismissed by the medical community for years, and we know how frustrating that is.​
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.​
Advocacy begins with sharing information, highlighting the diverse ways EDS impacts people, 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 or spreading awareness through social media.
Another way to help is by supporting businesses like OOF! that raise awareness. Every purchase not only supports a small, family-run business but also helps amplify the message about EDS.
On a personal level, taking the 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.
Ehlers-Danlos Resources
You can find educational materials, research updates, and practical tools for living with EDS on the Ehlers-Danlos Society website.
Join an online community like the OOF! Spoonie Squad Facebook group — a support group for anyone navigating chronic illness.
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Local support groups offer a chance to connect with others who understand the challenges of living with EDS.​
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Our favorite book: Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.
As a brand created by women living with EDS, OOF! exists as both a business and a mission.
We’re here to simplify beauty routines and empower confidence. Because OOF! life can be hard. We want to make it beautiful.
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.