Patient Stories

“Don’t give up hope.”

Hiba shares her compelling journey of self-advocacy and healing, overcoming years of misunderstanding and mistreatment by the medical community.

"For decades, I grappled with the dismissive attitudes of medical professionals," shares Hiba. Her earliest memories include a heightened awareness of her body at age 5, setting her on a challenging path of regular dieting by age 8. Despite exemplary lab work, free from traditional obesity markers, Hiba engaged in decades of yo-yo dieting, struggling to reduce the size of her legs and arms that had begun rapidly growing during her pre-teen years. Each unsuccessful attempt at weight loss brought the realization that her body was not functioning optimally. However, whenever she raised these concerns with her doctors, they were consistently ignored, and she was instead encouraged to channel her efforts into diet and exercise. 

In 2020, while researching a separate medical condition, Hiba unofficially diagnosed herself with Lipedema, a condition often mistaken for obesity or lymphedema by healthcare professionals. Although she had encountered this condition in her medical research endeavors before, she dismissed it as she did not exhibit all the classic traits. This time, however, she identified with the images she found, prompting her to delve deeper into understanding this connective tissue disorder and how it manifested in the body. The more she read about it, the more upset she became. It was first diagnosed in 1940, yet 80+ years later it is still relatively unknown. It affects between 5-17% of women, but is still commonly misdiagnosed as obesity. She exhibited many of the textbook symptoms, yet no doctor ever mentioned it despite her struggles with large, heavy, and painful limbs. Top of FormBottom of FormIn 2021, a lipedema specialist confirmed her self-diagnosis, marking the first time she found a doctor who not only understood her body but validated her decades-long struggle for health.

As she began to understand this condition, Hiba realized the need to have a medical team in place to help her treat Lipedema and its associated comorbidities. Given her rocky medical experiences, this was no small feat. "In one year, I talked to 25 medical professionals—primary care physicians, endocrinologists, cardiologists, therapists—trying to understand how to better manage this disease and its impact on my body." Armed with a proper diagnosis and the US Standard of Care for Lipedema, she met with various medical professionals and pushed them to explore solutions beyond the standard diet and exercise recommendations. Through this process of self-advocacy, she found a collection of partners who would help her on her journey toward optimal physical, mental, and emotional health.

Since her diagnosis, Hiba has tirelessly explored numerous conservative treatments to halt the progression of Lipedema and alleviate her pain. Despite her efforts, she experienced a rapid and sharp reduction in her mobility as well as an increase in pain. In October 2022, she decided to undergo Lipedema reduction surgery, a significant step towards reclaiming her life. Two more surgeries in June 2023 and December 2023 have provided a tremendous amount of relief. (Note: Some safety and efficacy data for surgery are available, but research is ongoing. Lipedema is not a one-size-fits-all all disease. LF encourages individuals living with Lipedema to research, talk with their clinical team, and make informed decisions about which treatments to implement.)

Reflecting on her transformation, Hiba expresses disbelief at the positive changes. "It's night and day. The pain has eased, and my activity levels have soared," she shares. Transitioning from barely walking 4,000 steps a day to consistently exceeding 10,000, Hiba has resumed her active lifestyle. This newfound strength and mobility fuel her aspirations, envisioning a future filled with travel and advocacy for people facing similar challenges.

Her story transcends a mere medical condition; it's a testament to resilience and the importance of self-advocacy. "For decades, I was gaslit and ignored by so many healthcare professionals. I ended up needlessly suffering for decades," she recounts. "I want to spare other people the suffering I endured simply because this disorder isn't well-recognized." By sharing her journey, Hiba hopes to inspire others to advocate for their health and seek the help they deserve, even when faced with skepticism. Her story serves as a source of inspiration, motivating individuals to persevere and take control of their well-being. She emphasizes the importance of sharing her story, acknowledging the isolating and lonely nature of dealing with chronic illness. If one person can find solace in her narrative, it gives her pain and struggle a purpose. 

For tips on how to advocate for yourself, check out the LF Patient Self-Advocacy Guide.