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Emma 💫🌈🎸

@em.albert

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nyc | boston

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One of my favorite parts of the VBF Clinic was getting to meet so many new people, especially others living with venous malformations. Being able to connect with people who understand what it’s like to live with these conditions means so much to me.

I know how important it is to find doctors who understand vascular malformations and to feel like you finally have someone who understands what you’re going through. That’s why being able to meet people, share experiences, and help connect others with the care and resources they need is so important to me. 🫶

I wish everyone affected by a vascular malformation could have access to the right doctors, answers, and support. If sharing my experiences can help even one person find the care they’ve been looking for or feel a little less alone, it’s all worth it.

I’m so grateful to the Vascular Birthmarks Foundation for bringing so many of us together. There’s something really special about finding people who just get it. ❤️

If you have a venous malformation or another vascular anomaly, I’d love to connect with you! We’re all in this together.

#VenousMalformation #VascularMalformation #VascularAnomalies #VBF

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This year has been amazing so far! I am so happy to have met so many new friends. Most of them are from the @one_rare_ event in Boston, MA. I miss hanging out with all of you. I love being around people who have rare diseases like me. Although we don’t have the same disease, we have similar symptoms and experiences that we can relate to.

This past weekend I was fortunate to attend and speak at the ELPFDD meeting with @lipodystrophyunited in Alexandria, VA. I reunited with my lipo family and met some new family members. Most of us do not live near each other so, it is special when we get together.

I hope we can see each other again soon!
I wish I could tag more than 20 people:( @serjicalsteel @ceceliachapleau
#lipodystrophy #lipodystrophyunited #raredisease #onerare #chronicillness

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This life is worth living. I am so lucky to have made so many new friends. #raredisease #onerare #lipodystrophy #lipodystrophyunited #rarerebels

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Did someone say karaoke? 🎤🎬 #karaoke #raredisease #popular #wicked #dancing

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I needed to post more photos from last week. Thank you to everyone who came and supported my artwork!!! Luv you all!!!

@positiveexposure #painting #portwinestain

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A few of the beautiful people who came to my art show on Friday. More pictures to come! You all make me burst with joy and pride.

Thank you for coming and making the night wonderful and celebrating vascular birthmark awareness day!

#painting #fineart #portwinestain

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While in town I got to stop by my friend Celina’s art show to celebrate international Vascular Birthmark Awareness Day with some of my friends from the birthmark community .❤️

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Why only graduate once when you can graduate twice???

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The finer details of graduation ✨

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Graduation #2 with the beautiful @em.albert

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Meet OSL Fellow, Emma!

Today is #rarediseaseday , so we asked Emma about life, style, and living with Bockenheimer Syndrome.

Check her out at @em.albert 🌟

ID: Photo of Emma, a white woman in an accented blue manual wheelchair, posing for the camera.she has pinkish red hair. “Rare Disease day, with OSL fellow, Emma.”

Photo of Emma smiling in a hospital bed with her leg in a cast. “What is your Rare Disease? “I was born with Bockenheimer Syndrome, or an extensive venous malformation of my entire left leg. it is an extremely rare progressive congenital vascular anomaly. I am also a full-time manual wheelchair user.”

“How does your rare disease affect your style? “My rare disease absolutely affects my style. As a wheelchair user, I think about seams, garment length, and how clothes move with my body.” But I also think about visibility.
Style is a way I reclaim narrative about other aspects of my identity.” Photo of Emma using arm crutches in a beautiful garden, there is lush greenery.

“How can we make style more accessible for people with disabilities?” “Accessibility should be embedded from the beginning, with unique design considerations for different groups, such as the distinct challenges faced by those with rare diseases. I want people to recognize that access isn’t a trend, it’s a design principle.” Photo of Emma on an outdoor stage in her wheelchair holding a microphone. She’s in front of a sign that says “Students rally for light, truth, and courage.”

“What do you want people to know about living with a rare disease? “Living with a rare disease is complex. It can be painful, exhausting, and uncertain, but it is also full of creativity, humor, and joy. We are not tragedies. We are not inspirational metaphors. We are people building full, complicated lives.” Photo of Emma in a graduation gown throwing her graduation cap into the air!

#disability #disabled #wheelchairuser #fashion Photo of Emma, a white woman in an accented blue manual wheelchair, posing for the camera.she has pinkish red hair. “Rare Disease day, with OSL fellow, Emma.”

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1 week later and still thinking about our amazing speakers…

Thank you to everyone who shared your voice with us.

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