Help Me Fight against ME and EDS

What would you do if you could buy more time?

My name is Arlen and I am fighting to buy myself more time to revive my life. I am living with Ehlers Danlos Syndrome, a connective tissue disease that is affecting every body system. I am living day-to-day, fighting to stay fed and housed while seeking specialized medical care for my rare disease.

If I had more time, I would use the knowledge and wisdom I’ve gained while battling my collection of rare diseases to help other patients. I dream of a world where patients with rare diseases can go to one place and receive compassionate care for all of their conditions.

I am fighting not just to survive, but to revive my life! This is bigger than just me - my disease may be rare, but my situation is not. I want to survive and revive so that I can continue raising awareness and fighting for our community. I am so hopeful for the day when I can create art, see my family, and build a foundation to support people with conditions that are hard to diagnose, manage, and treat. Last year, some friends took me around New York City and I got a tattoo to remind me that I can survive and revive.

When left untreated, EDS can cause many manifestations across the vascular, nervous, gastrointestinal systems and more. EDS is not fatal, but its comorbidities can be and I am fighting for my life.

Right now, all other treatment options are on hold due to the severity of my craniocervical instability. I wear a cervical collar 24/7 and I have now traveled to my 7th US state seeking specialized care. I have a long list of surgeries and treatments that I need, but they will not be effective until we stabilize my cervical spine.

I have assembled a dream team of EDS providers across many US states, including Dr. Clair Francomano, Dr. Petra Klinge, and Dr. Anne Maitland. I am now working with my internist/geneticist Dr. Clair to seek treatment with Dr. Fraser Henderson. There are only four neurosurgeons in the US and five in the world who can treat CCI in EDS and I am now in Maryland seeking care with Dr. Henderson, who requires self-pay for treatment.

I need your help to buy me more time to continue my journey. Funds will be used to keep me fed and housed while seeking medical care for my rare diseases.

I am also living with a metabolic disorder and must follow a strict high-calorie diet, which is very expensive to maintain. I must eat a large amount of food each day in order to survive and have enough energy to continue my fight for medical care.

I am looking for safe, stable housing, but my access needs are very unique and I am having a very hard time finding housing. Right now, my best option is staying in hotels because there are no stairs and I have a small room with a kitchen area, bathroom, and bed.

Immediate needs for funds:

$70 per night for hotel stay ($500 per week)

$500 per week for food

Ongoing needs for funds:

$800 - $1200 for new patient appointment with Dr. Henderson

Additional out-of-pocket costs for care with Dr. Henderson

Caregiver support

Please email MEMutualAidSociety at g mail dot com if you can provide help or support in any way.

COMING SOON!! Join the #BuyMoreTime Challenge on social media! Visit my advocacy page on instagram, tiktok, or facebook for inspiration. Record a video of yourself sharing what you would do if you could #BuyMoreTime and then challenge three friends to join the #BuyMoreTime Challenge by recording and sharing a video, challenging three more friends, or by donating $20 to my fundraiser.

Thank you for your help and support as I continue my fight to revive my life and fight for awareness, care and support for Ehlers Danlos and related conditions.

Starry Dazzle, by Arlen. Available for purchase on RedBubble