Support Zaia's Life-Changing Endometriosis Surgery

Help Zaia Cover Medical Expenses for Life-Altering Endometriosis Surgery and Recovery

My name is Loren Schaumberg and my fiancé is Zaia Grace. She is facing a life-changing surgery to treat endometriosis, a debilitating and complex full-body inflammatory disease that she has been battling for her whole adult life. Endometriosis causes tissue similar to the lining of the uterus to grow outside the uterus, leading to severe pain, adhesions, and at times organ damage or infertility. Despite affecting 10-15% of female-bodied people worldwide, endometriosis is often misunderstood, underdiagnosed, and undertreated. This October 2024, Zaia has undergone excision surgery, a specialized procedure to help her regain her health. Any donation to help with the cost of this surgery, no matter how small, is so deeply appreciated.

Why This Surgery Is Critical-

Zaia's excision surgery is the gold standard for treating endometriosis, as it directly removes the tissue that causes the disease. Unlike other treatments that only address symptoms, this surgery targets the root cause and will significantly improve Zaia's quality of life. The surgery will be performed by a minimally invasive gynecological surgeon with a fellowship in endometriosis excision, a level of expertise crucial for the best outcomes. Unfortunately, because such specialists often bill out of network, the cost of the surgery is not fully covered by insurance. The surgeons cost alone is over $10,000, and when factoring in hospital fees, recovery costs, and physical therapy, the total out of pocket expenses of this recovery are nearing $25,000.

Zaia's Journey with Endometriosis-

Zaia's battle with endometriosis began at an early age. At 17, during her first year of college, the pain became so severe that she was forced to leave school. For two years, she endured countless hospital visits, misdiagnoses, and medical neglect before finally receiving a working diagnosis of endometriosis at the age of 19. Doctors seeing Zaia at the time (who do not specialize in endometriosis) suggested drastic treatments like a hysterectomy or medically induced menopause—both of which have since been shown to be ineffective in treating the disease. In these instances, Zaia trusted her intuition and turned to alternative treatments such as hormone therapy, acupuncture, and physical therapy, while consulting with numerous specialists. While these efforts have helped manage the symptoms, they do not stop the progression of the disease itself, as the endometriosis tissue can continue to spread and impact organs. Surgery is now her only option to address the disease.

There have been endless incidents of debilitating pain throughout Zaia's life; passing out in middle school science class because of “cramping,” missing multiple days of high school every month because of pain, getting flown off the island twice because of displaying shock-like symptoms with intensive bleeding, and more. Two years ago, during Christmas, Zaia started to understand the level of impact this has had on her life when she woke up with a severe endometriosis flare, the familiar abdominal pain forcing her to spend the day in a recliner chair with a hot water bottle, barely able to speak or enjoy time with her family. As her family exchanged gifts and cooked Christmas dinner, Zaia could only sit and breathe through the pain, unable to participate. Not long after that, while driving to visit family, she had to pull over when the pain became unbearable. She collapsed, vomited, and sat by her car shaking as her body shut down from the intensity of the flare. This was a breaking point for her as she realized she could no longer live with these extreme incidents of pain that have been her monthly reality for years.

How Endometriosis Has Affected Zaia's Life-

Endometriosis has taken an enormous toll on Zaia's life. For perspective, the disease is ranked among the top 20 most painful medical conditions, and considered more painful than a heart attack. Over the years, Zaia has had to miss out on countless, cherished life experiences—holidays with family, performances as a musician, and countless work and education opportunities. The daily pain has often left her bedridden, unable to fully care for herself or participate in what brings her the most joy. Simple tasks like walking to class or running errands have, at times, felt impossible. The financial burden has been significant over the years, and is now peaking as from September to February Zaia will be unable to work or attend school while she recovers from surgery, leaving her with no income during that time.

How You Can Help-

The total cost of Zaia's surgery, recovery, and physical therapy exceeds $25,000. Her family can contribute $10,000 for the surgery and will be covering living expenses, and insurance may cover $6,000, but there is still a gap of $9,170 that needs to be raised. Any amount of support would go a long way in helping Zaia cover these remaining expenses. Please consider donating $20 or more towards this goal and sharing this gofundme with your loved ones to help support Zaia in her recovery.

The Impact of Your Support-

Your support will provide Zaia the opportunity to improve her quality of life, regain control over her health, and move forward with her passions and dreams. This surgery will also help preserve her fertility and prevent the disease from spreading to other organs, which could otherwise lead to more serious health consequences. Beyond the physical relief, this surgery offers Zaia the chance to be present in the lives of her loved ones and participate fully in the experiences that make life meaningful.

Endometriosis: A Social Justice Issue-

Endometriosis is more than just a medical condition—it is a major social justice issue. Consider the following facts:

Between 25 to 50 percent of infertile female-bodied people have endometriosis.

Diagnosis is delayed by an average of 7 to 12 years due to lack of endometriosis funding and research, inadequate training among healthcare providers, and awareness within the medical field and our culture. During this time, the disease often progresses exponentially, causing symptoms to worsen over years.

There is no known cause of endometriosis, therefore there is no known cure. However, endometriosis surgery with a minimally invasive gynecological surgeon who has their fellowship in endometriosis excision is the gold standard for managing the disease.

Endometriosis does not show up on any imaging, therefore care is dependent on a practitioner trained to recognize the cluster of symptoms present with the disease.

Endometriosis affects 1 in 10 female-bodied individuals worldwide, yet it is grossly underfunded and under-researched. OBGYNs, the doctors who are often turned to when symptoms first appear, manage many conditions and do not specifically specialize in endometriosis. Because of this, they are often not trained in the surgical techniques associated with the best outcomes for recovery. Many of the common treatments for endometriosis in the medical field not only fail to disrupt the progression of the disease, but can at times make symptoms even worse.

The disease is often misdiagnosed as dysmenorrhea, also known as "painful periods.” This dismissal of the disease happens in part due to the gender bias that downplays pain in female-bodied people. When someone is incredibly sick but just told they have “painful periods,” it implies that their struggles are not due to a disease wrecking havoc on the body, but instead due to their inability to cope. Experiencing this dismissal while managing intense, debilitating pain is often traumatic for patients and can lead to significant mental health impacts.

Endometriosis is one of the top 20 most painful medical conditions, considered more painful than heart attacks, yet it continues to be ignored by the medical community. Most people seeking answers for their pain never receive pain management support, adequate information about their disease, or guidance on how to treat the disease.

Despite its prevalence and devastating impact, there is still a significant lack of education and resources dedicated to endometriosis care. Zaia's story is not unique; she represents the millions of individuals who have had their pain dismissed and their health neglected, being told that there is no explanation for their pain. As Zaia heals from this experience, she is dreaming of dedicating her time to spreading awareness about this disease to help others who are facing the same difficulties.

How You Can Make a Difference-

By contributing to this campaign, you will help Zaia cover the costs of her surgery, physical therapy, medical equipment, and other recovery expenses. Every bit of support, whether financial or through sharing her story, will make a difference in helping Zaia reclaim her health and her life.

Thank you for your kindness and generosity. Your support means more than words can express.