Raising awareness for vascular Ehlers-Danlos syndrome (vEDS)
“Of all the precious gifts in life, to have you as my son was the greatest gift of all.”
Our son, our why
This page is dedicated to the life and legacy of Denton Lee Rhodes. He was and forever is a beloved son, family member, and friend whose story now fuels a mission: to make sure more families and healthcare providers recognize the signs of vascular Ehlers-Danlos syndrome (vEDS) early.
Behind every medical term is a human life. Denton’s life matters. His story is one of love, laughter, and courage — and also of how a rare, often-missed genetic condition can change everything in an instant.
Why this page exists: to honor Denton, to share what vEDS is, and to push for better awareness, earlier recognition, and compassionate care for every person and family living with this condition.
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What is vascular Ehlers-Danlos syndrome (vEDS)?
Ehlers-Danlos syndromes are a group of genetic conditions that affect the connective tissues that help support and hold the body together. Vascular Ehlers-Danlos syndrome, sometimes called “vascular-type EDS” or “type IV EDS,” is a rare but especially serious form that mainly affects the arteries and internal organs.
People with vEDS have very fragile blood vessels and tissues. This means they can be at high risk for internal bleeding, organ rupture, or tears in major arteries, sometimes at a young age and often without much warning.
Key facts about vEDS:
- Genetic: Usually caused by changes (mutations) in the COL3A1 gene, which affects collagen.
- Rare: VEDS is much less common than other types of EDS and is considered ultra-rare.
- Serious: It can lead to life-threatening complications, especially involving the heart and blood vessels.
Common signs and features to know
Not everyone with vEDS looks the same, but there are patterns that can be important clues. If you see a “cluster” of these signs — especially in a child, teen, or young adult — it’s worth asking about vEDS and related conditions and seeking medical evaluation.
- Very fragile skin: thin, delicate or translucent skin where veins are easy to see.
- Easy bruising: bruises that appear from minor bumps or without a clear cause.
- Distinct facial features: thin lips and nose, small chin, large or wide-set eyes, small or absent earlobes.
- Early vein problems: varicose veins at a young age, or other circulation issues.
- Serious vascular events: tears or ruptures in arteries or organs at younger ages than usual.
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How vEDS is managed
There is currently no cure for vascular Ehlers-Danlos syndrome, but there are ways to manage risk, monitor health, and respond quickly to complications. Care is usually guided by specialists such as cardiologists, vascular surgeons, geneticists, and other clinicians who understand connective tissue disorders.
- Regular monitoring: imaging and exams to track blood vessels and organs when recommended.
- Careful activity guidance: some activities may need to be modified or avoided to reduce injury risk.
- Emergency awareness: clear plans so that sudden, severe pain or other warning signs are taken seriously.
- Family screening: because vEDS is genetic, relatives may be offered evaluation or testing.
Our advocacy, in Denton’s name
For us, advocacy means that Denton’s story does not end with silence. It moves into exam rooms, medical classrooms, emergency departments, and living rooms where families are searching for answers.
- For families: We want you to have the words “vascular Ehlers-Danlos syndrome” in your vocabulary sooner, not later.
- For clinicians: We ask you to hold rare conditions in mind when young patients
