Help Diana with Her Medical Journey

Hi, my name is Ann, and I am reaching out with a heavy heart to share my 24 year old daughter’s story and ask for your support as she navigates life with debilitating chronic illnesses and medical complications.

Here’s a summary of Diana’s journey to this point in her words.

In 2018, I was diagnosed with POTS, Ménière’s disease, and endometriosis. Conditions that brought me pain, fatigue, and daily challenges. Despite this, I tried my best to live a full life. But in 2023, everything changed. I started to get very sick, very fast. I experienced extreme nausea that left me unable to eat, leading to significant weight loss. Chronic pain spread all over my body, and I struggled with GI issues, kidney problems, chest pain, and migraines that were so severe they left me unable to function on a daily basis. My legs developed severe blood pooling, making it painful to stand or walk, extreme exhaustion no matter how much I slept. These symptoms sent me to countless emergency room visits, specialist appointments, and medical tests, but no one could provide answers.

In June 2024, after over a year of suffering and searching for a diagnosis, I was finally diagnosed with four rare vascular compression syndromes, MALS, Nutcracker Syndrome, May-Thurner Syndrome, and Pelvic Congestion Syndrome.

Understanding Vascular Compression Syndromes

For those unfamiliar, vascular compression syndromes occur when blood vessels are compressed by surrounding structures, causing abnormal blood flow, severe symptoms, and potentially life-threatening complications. Here’s what these specific conditions mean

MALS, The celiac artery, which supplies blood to the stomach and other abdominal organs, is compressed by the median arcuate ligament, causing intense abdominal pain, nausea, and digestive issues.

Nutcracker Syndrome (NCS), The left renal vein is compressed between the aorta and superior mesenteric artery, leading to flank pain, blood in the urine, and kidney dysfunction.

May-Thurner Syndrome, The left iliac vein is compressed by the right iliac artery, causing impaired blood flow in the legs, swelling, and a higher risk of blood clots.

Pelvic Congestion Syndrome, Veins in the pelvis become compressed and dilated, causing chronic pelvic pain and a heavy, aching sensation.

These conditions have wreaked havoc on my body, leaving me in chronic pain, malnourished, and struggling to function. In September 2024, I underwent a large open surgery to address MALS. Unfortunately, complications from the surgery have left me worse than I was before. I am now almost bedridden, struggling to manage my symptoms while trying to recover.

I now need another major surgery

For my nutcracker syndrome and Due to the severity of my NCS and the complications I developed after my open MALS surgery, my medical team has determined that autotransplantation (AT) is the best surgical option for me. This procedure offers the highest likelihood of resolving my symptoms and preventing future complications like kidney failure. Unfortunately, While my surgeon is one of the best in the country at BWH for vascular compression syndromes, he does not offer the AT procedure.He only offers LRVT surgery for this illness which is not suitable for my specific case. This means I will need to travel out of state to find a specialist who can perform the AT surgery that I desperately need. This adds significant logistical and financial challenges to an already overwhelming situation, including consultations with a new surgical team, travel expenses, and the cost of the surgery itself which insurance won’t cover since it is out of state. The financial burden of this journey has been overwhelming, and my family’s situation makes it even more challenging. My father passed away in 2022, leaving a void in my life that cannot be filled. My mother, who is disabled is unable to provide the care I need. Medical bills, travel costs to see specialists, and the cost of daily living with chronic illness have become insurmountable since Iv had to stop working due to my condition and am struggling to get approved for disability.

Thank you everyone for reading my story! -Diana

I am asking for your support to help my daughter get the care she needs on this long hard road to a healthy life. Your donations will go toward:

Ongoing Medical Bills: Including specialist visits, tests, and treatments that weren’t fully covered by insurance.

Daily Living Expenses: To help me manage life while I recover and work toward regaining my independence.

Out of state surgery: travel expenses, boarding, appointments, and surgery.

Every donation, no matter how small, brings my daughter one step closer to reclaiming her life. If you can’t donate, sharing her story means the world to us and may help me reach others who can assist and also spread awareness for such rare conditions.

Thank you for supporting my girl in this incredibly difficult chapter of her life. I am holding on to hope that with your help, she can find relief, recovery, and a brighter future.

With gratitude,

Ann & Diana