Hi! My name is Bells! I am 18 years old and I was recently diagnosed with Vascular Ehlers-Danlos syndrome, along with many other disorders and syndromes. I'm here to ask

for some support, please read my story below!

Vascular Ehlers-Danlos Syndrome (VEDS) is a life-threatening, genetic condition. While not always instantly "terminal," it is considered a life-limiting disease that carries a high risk of severe complications, including arterial ruptures, and significantly shortened life expectancy.

It is a rare and severe genetic connective tissue disorder that primarily affects the body's arteries, intestines, and organs, making them highly fragile and prone to tears or ruptures. It is considered the most serious type of Ehlers-Danlos syndrome.

I also suffer from severe Gastroparesis, which is a chronic, debilitating condition in which the stomach's muscles and nerves do not function properly, causing food to sit in the stomach for an abnormally long time. It causes me unrelenting nausea, frequent vomiting, painful bloating, and a rapid feeling of fullness (early satiety) after just a few bites of food. My chronic vomiting has led to severe electrolyte imbalances, dramatic weight loss, and dangerous dehydration.

I also have been diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is a serious, long-term illness that affects multiple body systems. It is primarily characterized by extreme, debilitating fatigue that is not improved by rest, along with severe physical or mental exhaustion triggered by even minor exertion.

Unfortunately, I have even more diagnoses, including POTS and other debilitating conditions. I am also in the midst of being tested for multiple other conditions and syndromes. Unfortunately these conditions require special treatments and medical specialists that can cost thousands.

Due to these conditions, I cannot work. I am mostly bedridden and suffer from severe chronic pain, resulting in using a wheelchair at times to go out. I have no income and am currently in the process of getting on Disability. Unfortunately, due to the unpredictable time it may take, at this moment while I'm going through the process, I have no income or ability to make income in the meantime.

I've decided to start a GoFundMe in hopes of receiving some support and funds to pay for medical supplies, including a needed wheelchair, necessities, and testing/treatment while waiting for disability services to approve my case.

Despite me qualifying, getting approved for Social Security disability benefits (SSDI or SSI) typically takes 7 to 8 months for an initial decision, though processing times can stretch to a year or more. Due to massive backlogs, wait times vary significantly by region; for instance, where I live, the average wait in Florida is about 343 days.

Anything truly does help! I hope that by a small chance I can receive my benefits sooner, but until then I'm currently stuck with no income and my Primary Care Provider (PCP) has stated I cannot work due to disability and associated risks. Until then, I need support and help. Especially being homeless, I have turned to stay with my partner who can only do so much due to us being so young.

This is me, I still am so young fighting this battle, I hope this can resonate with you. 

Despite all of these challenges, I still want to continue to accomplish my dreams and aspirations, I hope to make the best of what time I have left. Thank you