When it comes to lifelong, progressive diseases like lymphedema, early diagnosis is critical to preserving function, preventing complications, and maintaining quality of life.
But what happens when you can’t get a diagnosis, let alone find a provider who understands your condition?
A recent study published in Scientific Reports confirmed what many people with lymphedema already know: getting a diagnosis can take years, if it happens at all. The study found that more than 80% of people with non-cancer-related lymphedema had to see more than one doctor before getting diagnosed, and nearly one-third saw five or more.
Meanwhile, as patients bounce from provider to provider without answers, their condition often worsens. For people already facing health disparities, the path to diagnosis can be even longer, and access to treatment that much further out of reach.
To better understand what this looks like in practice, I spoke with Dr. Alexandra “Alex” Hill, a physical therapist specializing in oncology, pelvic health, and lymphedema rehabilitation, and Leandrea Long, an advanced practice nurse and certified lymphedema therapist providing mobile care in Orlando, Florida.
As women of color working across clinical, educational, and community-based settings, both clinicians bring perspectives shaped by lived experience and a deep commitment to expanding access, building trust, and meeting patients where they are.
Why Many Doctors Miss the Signs of Lymphedema
One of the biggest barriers to timely diagnosis is that many healthcare providers simply don’t know what lymphedema is, how it’s managed, or where to refer patients.
“Family medicine and primary care providers should have training on lymphedema to address this issue, as they are front line in diagnosing and referring,” says Dr. Hill. Yet most patients cycle through multiple physicians before receiving the care they need. In the same Scientific Reports study, patients described physicians as uninterested or unknowledgeable about lymphedema.
Long sees this problem regularly in her own practice, noting a lack of qualified medical professionals who can accurately diagnose lymphedema and recommend therapy. “Physicians tend to misdiagnose lymphedema by focusing on trying to rule out more known conditions that can cause edema.”
The consequences of this lymphatic ignorance are felt the most by the patients. “I see and hear too often that patients report swelling to their providers who just put them on water pills, but this can actually make lymphedema worse,” says Dr. Hill. “By the time they get referred for lymphedema rehab, they have a more advanced lymphedema diagnosis.”
“This makes it harder to manage when patients finally get to see a therapist,” Long adds.
When Medical Education Fails Patients with Darker Skin
Most clinicians aren’t prepared to recognize or treat lymphedema, and the gap widens even further when it comes to patients with darker skin tones.
“Unfortunately, many examples and images in textbooks and courses are of lighter skin, so providers are not adequately trained to understand what skin conditions look like on varying skin tones,” explains Dr. Hill.
This isn’t unique to lymphedema education: a study of general medicine textbooks found that under 5% of images included dark skin tones, while an analysis of images in the New England Journal of Medicine found only 18% depicted non-white skin tones.
Why does this matter? Take cellulitis, for example. This serious bacterial skin infection can become life-threatening if not treated quickly, but its telltale red rash can present differently on melanated skin.
When providers aren’t trained to recognize these differences, infections may be missed in their early stages. This can lead to hospitalization, long-term complications, and loss of trust in the healthcare system.
Dr. Hill works to address this gap by including diverse skin tones in the courses she teaches clinicians and the education she provides to patients.
Research Gaps Exacerbate the Problem
The lack of representation doesn’t stop with education, but extends into research as well. A 2024 review found that most lymphedema studies do not report participants’ race or ethnicity. This makes it difficult to know whether findings apply equally to all populations, and without inclusive data, providers are left guessing how treatments may work across diverse groups.
“The advancement in therapy and potential treatment starts with understanding the condition,” says Long. “We can only get there through studies that reveal the information for us as therapists and healthcare providers to utilize when treating our patients.”
The Access Crisis
Proper training and representation can help clinicians recognize lymphedema, but recognition is only the first hurdle. Getting timely treatment is an even bigger challenge.
The Therapist Shortage
Long cites the overwhelming shortage of certified lymphedema therapists (CLTs) as one of the biggest barriers for what she describes as the “astronomical number” of patients in need of lymphedema therapy.
According to the Norton School of Lymphatic Therapy, there’s roughly one certified lymphedema therapist for every 1,300 people in Germany. In the United States of America, there’s about one for every 100,000.
“The lack of therapists leads to long waitlists for large hospitals, home health agencies losing opportunities due to no qualified staffing, and patients being turned away and not getting the therapy that they need in a timely manner,” Long explains.
“Because I am a mobile provider, who is also a solopreneur, my capacity to treat patients lies within a certain geographical area, leaving a great number of patients without access to therapy that can be done in the home setting.”
The Cost Barrier
Even when patients do find a therapist, insurance coverage is inconsistent. While some states have passed laws mandating lymphedema treatment coverage, many patients must pay out of pocket for compression garments, manual therapy, and ongoing management.
For underserved communities, these costs can make long-term management nearly impossible.
The Education Gap for Patients
Lymphedema is a lifelong condition that requires daily self-care, yet many patients receive little education about how to manage it.
A recent review of breast cancer-related lymphedema care found that patients from non-white racial or ethnic backgrounds and those with lower incomes were more likely to receive inadequate education and survivorship support.
“In general, there is a lack of understanding of best management for lymphedema and resources for accessing care,” explains Dr. Hill. “Lymphedema is a lifelong condition that progresses if not treated early and appropriately, but care is also very costly. For those with limited financial and supportive resources, it can make managing this condition even more difficult, and it can be challenging to find support.”
Long emphasizes that effective lymphedema management is multifaceted, and clinicians must address more than just swelling.
“As providers we cannot just focus on managing the swelling alone but also manage other aspects of the overall condition such as the mental capacity of the patient, their physical capabilities, family dynamics, body image issues and the financial complexities of the condition,” she explains. “When we as providers manage the whole person and not just the condition, better outcomes would be achieved.”
Understanding Lymphedema: More Than Just Swelling
A lot of people tend to associate lymphedema with breast cancer, but the condition has many causes.
“Cancer and related treatment are one of the most common causes of secondary lymphedema,” explains Dr. Hill. Lymphatic dysfunction can be triggered by the tumor itself, radiation therapy, surgery (especially removal of lymph nodes), and even some chemotherapy agents, she continues. According to research, gynecologic cancer patients face a 20-40% risk of developing lymphedema, and head and neck cancer patients treated with multimodality therapy experience rates as high as 90%.
Lymphedema doesn’t just affect the arms or legs, either. “A lot of people don’t realize that lymphedema can occur internally, including inside the mouth and throat for those who have head and neck cancer, and within the pelvis for those with pelvic cancer,” Dr. Hill notes. “As CLTs, we can address the lymphedema – from head to toe and everywhere in between!”
For Long, the intersection with post-operative care is particularly important. “Most post-operative patients have never heard of the lymphatic system and how it relates to their healing and recovery process,” she observes. “The degree of swelling and bruising a patient experiences is directly correlated to the functionality of their lymphatic system. Patients should be more aware of the lymphatic system and how it can prolong the healing process if it is not optimized prior to surgery.”
This is why early surveillance matters so much for cancer patients. “It’s important for all cancer survivors to not only understand their risk for developing lymphedema, but to get baseline measurements before treatment starts, and ongoing surveillance,” emphasizes Dr. Hill. “The earlier we can diagnose lymphedema, the better the treatment outcomes.”
Research confirms this approach: studies show that early detection through prospective surveillance and intervention can significantly reduce progression to chronic lymphedema. The alternative – waiting until symptoms are severe – means patients arrive at treatment with more advanced disease that is harder to manage.
Yet lymphedema isn’t only a consequence of cancer. “It can be genetic, due to obesity, venous dysfunction, trauma, infection, and more,” Dr. Hill points out. “If more providers were aware of lymphedema, how it presents, and what the risk factors are, I think we would be getting more prompt referrals to lymphedema rehab earlier.”
Why Representation Matters
Both clinicians stress that representation – cultural, racial, and community-based – plays a major role in trust and outcomes in lymphedema care.
Dr. Hill shares that many patients of color report being dismissed when they raise concerns to their healthcare providers. “Sadly, we still see a lot of bias, discrimination, and lack of training for cultural and racial considerations that ends up leading to delayed diagnosis and care, suboptimal care, and mistrust from patients who don’t feel heard.”
For patients who’ve endured medical discrimination, seeing a provider who not only looks like them but also understands their lived experience can be a welcome comfort. “I have had patients who say they feel relieved when they see I am a woman of color because they know they can trust me, and then tell me stories of poor care they have received in the past,” Dr. Hill shares.
Long emphasizes the fundamental human need for connection: “Representation matters in the healthcare system, period. I think people are more inclined to be trusting of healthcare providers that look like them, because they can relate to some of the same life scenarios. Trust is built when you develop relationships with others. When your actions reflect care and compassion towards others.”
The research on this topic tells a nuanced story. While some studies have found meaningful benefits to race-matched care, the evidence isn’t entirely uniform. A comprehensive review of 27 studies found that only about a third showed clear positive associations, with another third finding no effect and the rest showing mixed results depending on the specific outcome measured.
What is consistent from the research is that when patients feel they share common ground with their providers – whether through race, language, culture, or life experience – it can strengthen trust and communication. At the same time, other factors like how well a provider listens, cultural competency, and continuity of care often matter just as much, if not more, than shared race alone. Patients do better when they feel heard, respected, and understood.
This by no means diminishes the importance of representation. As a Commonwealth Fund report notes, increasing diversity in healthcare can improve care quality and patient satisfaction while helping to reduce other disparities. The goal isn’t to suggest that only providers of the same race can deliver excellent care, but rather to recognize that representation matters as part of a larger effort to build trust, understanding, and equity in healthcare.
“We know in the research that representation matters. Period,” Dr. Hill states emphatically. “More diversity in the workforce not only makes healthcare stronger, but patients get better care and we see less disparities.”
What Comes Next: Resources, Hope, and Action
Despite the challenges, both clinicians are still hopeful about the future of lymphedema.
Finding Help
For someone who suspects they may have lymphedema but hasn’t received clear guidance, Dr. Hill and Long emphasize that help is available. “Check online with resources like the National Lymphedema Network (NLN) and Lymphatic Education & Research Network (LE&RN), among others,” advises Dr. Hill. “And advocate for yourself by finding a lymphedema therapist through directories like the ones offered through NLN or LANA. Finding and working with a CLT who can champion for your care is key.”
Long echoes this: “There are resources available that can help them get an official diagnosis and therapy, such as the NLN. The earlier they consult with a therapist or a specialized medical provider, the better their prognosis.”
Reasons for Hope
When asked what gives them hope about the future of lymphedema care, both clinicians point to growing awareness and scientific progress.
“More and more recognition of the condition as well as continued advocacy for increasing research dollars and studies to discover more about this condition and the best ways to manage it,” Dr. Hill says.
Long shares similar optimism. “I am hopeful in the future of lymphedema because of the awareness of the condition and the vast amount of research in lymphatic conditions,” she says. “I am also hopeful of a cure through the many different types of microsurgery now available to patients.”
“The advances in surgeries, compression therapy, medications, and self-care including our understanding of sleep, nutrition, and exercise for lymphedema, is very promising,” adds Dr. Hill. “We just have to keep pushing forward!”
Lymphedema Doesn’t Discriminate
No one should suffer simply because the system failed to see them.
Lymphedema affects people of every race, gender, and socioeconomic background, and access to care should reflect that reality. When systems delay diagnosis and limit access, patients pay the price with their health and quality of life.
But this is not inevitable: when lymphedema is recognized early and care is accessible, better outcomes will no longer be the exception, but the expectation.
About the Contributors
Dr. Alex Hill
Dr. Alex Hill, PT, DPT, PWCS, OnCS, CLT-LANA, is a board-certified physical therapist specializing in pelvic health, oncology, and lymphedema rehabilitation. She owns OncoPelvic PT in Jacksonville, Florida, and provides both in-person and telehealth services. She is also an educator, researcher, and national speaker.
Leandrea Long
Leandrea Long, MSN, APRN, FNP-C, CLT, is an advanced practice registered nurse and certified lymphedema therapist with over 18 years of nursing experience. She owns LA Wellness Center, LLC, a mobile practice in Orlando, Florida, providing in-home lymphedema and vascular care.
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Special thanks to Alex Hill and Leandrea Long for their collaboration on this piece, and for sharing their time, passion, and expertise on the topic of access to care!
