Despite being first identified in medical literature in the 1940s and impacting 5-12% of women annually, medical professionals rarely diagnose Lipedema due to the lack of training and awareness to recognize the disease.
Nurses have the most face time with patients, so nurses must understand what Lipedema is and how to recognize the signs.
We spoke with Ana Pozzoli, PT, CLT, National Lymphedema Network expert clinician, about how nurses can play a pivotal role in helping women receive care and treatment for Lipedema. What follows is our interview, edited for length and clarity.
Ana Pozzoli is a licensed physical therapist and certified lymphedema therapist with over thirty years of experience in orthopedics and lymphatic disorders. The focus of her work is a mix of orthopedics and mostly lymphatic disorders. She and her husband own Omnitherapy Center, LLC.
What is Lipedema?
Lipedema is a chronic medical condition involving loose connective tissue. Lipedema is characterized by symmetric enlargement of the legs due to deposits of fat beneath the skin. It is predominantly diagnosed in women. The cause of Lipedema is unknown; however, there is evidence of hormonal and hereditary influences. It is identified by increased nodular and fibrotic adipose tissue in the gynoid areas, the buttocks, hips, thighs, lower abdomen, and limbs. Many believe these changes start at different hormonal stages in a female’s life, such as puberty, pregnancy, pre-menopause, and menopause. It is a common condition but underrecognized. The hallmark of Lipedema is tissue inflammation. This often painful medical condition usually worsens gradually. Few physicians recognize the constellation of signs and symptoms to diagnose it properly.
How many people suffer from this condition? Are they generally women?
Though comprehensive epidemiology data is lacking, Lipedema impacts 5-12% of women.
What is the prognosis for women with lipedema?
With a Lipedema diagnosis, it is believed the different hormonal stages of a female’s life can worsen the condition. It is a gradual worsening of the adiposity in the legs, though some individuals develop Lipedema that stabilizes. In the early stages of Lipedema, most females have a normal appearance above their waist. The upper extremities, chest, torso, and abdomen can also enlarge. Physicians underrecognize it; if left untreated, it can progress, causing mobility and disability issues.
Why is it rarely diagnosed or misdiagnosed?
Lipedema was first diagnosed in the 1940s at the Mayo Clinic by Allen and Hines. The pathophysiology of Lipedema needs to be better understood and routinely included in medical school curricula. There is currently no specific test to identify Lipedema. Imaging studies like ultrasound, MRI, lymphoscintigraphy, and lymphangiogram may be helpful, although test results may appear normal in the earlier stages.
The medical community often confuses lipedema with obesity and lymphedema. Other similar disorders are Lipohypertrophy (no pain and edema), Chronic venous insufficiency, and other idiopathic edemas. Misdiagnosis in patients with Lipedema is concerning, as it can delay appropriate management of the condition and allow the progression of the condition.
What are the physical signs and symptoms and genetic markers for diagnosing Lipedema?
Lipedema signs and symptoms vary from person to person, including abnormal adiposity in both legs, extending from buttocks to ankles. These may include the tendency to bruise easily, pain sensation in the legs, having knee (Genu) valgus, smaller waist in relation to the hips, hypermobility of the joints, pes planus, cuff sign at the ankles, and is generally resistant to dietary and exercise interventions. General fatigue and physical impairment are often observed. There is swelling with symmetrical enlargement of the lower limbs due to abnormal adiposity. Some manifestations to watch for may indicate weight loss has been non-respondent to exercise; elevation does not tend to help; absent or minor pitting edema; vascular fragility; tenderness in the affected areas; and negative stemmer signs.
Many clinicians and patients reference Stages of Lipedema. You can read more about staging here. For more comprehensive guidelines on diagnosis, you can reference the Standard of Care.
What are the treatment options available for Lipedema?
There is no one effective treatment approach for treating Lipedema. Management to prevent progression and alleviate symptoms is the therapy goal. Current guidelines recommend conservative therapies such as specialized compression garments and manual lymphatic drainage (MLD).
Manual lymphatic drainage targets the extra fluid retention of the extremities in the later stages. It also helps with reducing pain sensation.
Compression therapy helps support the tissue and prevent increased fluid retention. The compression is selected according to the lipedema type and location in the body. It can be in leggings, Bolero for arms, Knee Highs, capri, and shorts. Flat knit or micro-massage materials tend to support the tender tissue where the adiposity is present. Circular knit garments tend to bind on the tissue and create more discomfort. In the later stages, bandaging may be applicable in their treatments. Each patient needs to be assessed individually for garment selection. A pneumatic compression device(pump) can be beneficial in self-management.
Exercises should also be individual to the patient’s needs. The focus should be on posture, strength, mobility, balance, joint hypermobility, and gait. Some tools that are implemented are aqua therapy, vibration plates, and exercise equipment. Some of the techniques used as exercise can range from yoga, tai chi, swimming, and Pilates. Exercise should not be aggressive because it may cause the body to produce inflammatory hormones during performance of, such as cortisol.
Skin care is critical at all stages of lipedema. Many patients consider dry brushing and moisturizing the skin as essential. The best way to care for the skin is to hydrate from within. Drinking water is vital.
Nutrition suggestions vary but can play a significant role in the inflammatory condition of Lipedema. Understanding the anti-inflammatory way of eating can be a part of self-management. Remember that the FDA does not test supplements, so there is no way to know possible side effects. Most diuretics do not help alleviate the swelling of Lipedema. Liposuction can be valuable for some people to manage pain and improve mobility. However, research is still evolving on the effectiveness of surgery. Surgeons have different approaches; there must be clear research to recommend one approach over another. We encourage you to research, and your decision should be made in partnership with a qualified medical professional.
How can Nurses communicate information about the disease with patients?
Nurses can be a liaison in the care of a Lipedema patient. Many times, nurses are the first practitioner to see the patient. By recognizing the signs and symptoms, a differential diagnosis may be made instead of labeling the patient as obese. Since nurses are in direct communication with the physicians or the specialist in the medical team, noticing and documenting the criteria that classify the patient as Lipedema will initiate a dialogue about the patient’s condition.
What general facts and advice should nurses know about lipedema to help their patients?
The fact is that Lipedema is an actual chronic condition of loose connective tissue. If the patient fits the criteria profile, the patient should not be diagnosed as obese based solely on BMI.
Another fact is that Lipedema predominantly affects women.
There is an actual asymmetrical body composition, a smaller trunk compared to the lower portion of the body. The feet and hands are usually spared.
Lipedema is progressive if left untreated, and is common but misdiagnosed and underrecognized. This condition carries psychological morbidity.
Look for signs and symptoms if you think the patient may display Lipedema. Be compassionate with the patient, and do not judge. Guide the patient to the proper resources, such as the Lipedema Foundation.
What role do nurses play in helping patients (women) receive care and treatment for this ailment?
Nurses play a critical role in showing an understanding of the signs and symptoms that are involved in the diagnosis of Lipedema.
Discuss with your patients that there is help for them to manage the condition’s progression.
Show compassion when the patient tells you they have tried many things and that nothing works for them.
In addition, nurses are also health care providers who can become certified lymphedema therapists by the many certification institutions.
What can nurses do to help patients with this condition?
Once Lipedema has been identified, reassure your patient that it’s not their fault that their body looks different.
Early recognition and functional limitations can enhance the ability of the patient to make lifestyle changes to improve the quality of life.
Guide the patients in the right direction with proper recommendations to the health care practitioners equipped to treat them.
Where can nurses go to become educated about lipedema?
Herbst KL, Kahn LA, Iker E, Ehrlich C, Wright T, McHutchison L, Schwartz J, Sleigh M, Donahue PM, Lisson KH, Faris T, Miller J, Lontok E, Schwartz MS, Dean SM, Bartholomew JR, Armour P, Correa-Perez M, Pennings N, Wallace EL, Larson E. Standard of care for lipedema in the United States. Phlebology. 2021 Dec;36(10):779-796. doi: 10.1177/02683555211015887. Epub 2021 May 28. PMID: 34049453; PMCID: PMC8652358.
Bonetti G, Herbst KL, Dhuli K, Kiani AK, Michelini S, Michelini S, Ceccarini MR, Michelini S, Ricci M, Cestari M, Codini M, Beccari T, Bellinato F, Gisondi P, Bertelli M. Dietary supplements for lipedema. J Prev Med Hyg. 2022 Oct 17;63(2 Suppl 3):E169-E173. doi: 10.15167/2421-4248/jpmh2022.63.2S3.2758. PMID: 36479502; PMCID: PMC9710418.
Okhovat JP, Alavi A. Lipedema: A Review of the Literature. Int J Low Extrem Wounds. 2015 Sep;14(3):262-7. doi: 10.1177/1534734614554284. Epub 2014 Oct 17. PMID: 25326446.
Warren Peled A, Kappos EA. Lipedema: diagnostic and management challenges. Int J Womens Health. 2016 Aug 11;8:389-95. doi: 10.2147/IJWH.S106227. PMID: 27570465; PMCID: PMC4986968.
Cleveland Clinic has received a gift of more than $12 million from The Howley Foundation to double the number of nurse scholars at Cleveland Clinic beginning in fall 2023.
In recognition of this new generous gift and the Foundation’s cumulative support, all programs within the ASPIRE initiative at Cleveland Clinic will be renamed to honor the Howley name, including the Howley ASPIRE Nurse Scholars Program.
The nursing program is for local high school and college students and seeks to increase diversity in healthcare, address opportunity gaps and reduce health disparities in the community.
“It’s essential that we diversify the pipeline of our future healthcare workforce, including nurses, to better represent our patients and the communities we serve,” says Tom Mihaljevic, M.D., CEO and President of Cleveland Clinic and the holder of the Morton L. Mandel CEO Chair. “We are grateful for the Howley’s continued support and passion for increasing diversity and equity in our next generation of caregivers.”
The gift will allow the nurse scholars program to double enrollment annually to approximately 50 students from Cleveland-area high schools.
Students enter the program as high school juniors and are taught an innovative curriculum that explores the nursing profession, socialization, and integration into healthcare. High school graduates then can earn a scholarship to pursue a bachelor of science degree in nursing from the Breen School of Nursing and Health Professions at Ursuline College.
Students work as patient care nursing assistants at Cleveland Clinic during the summer after high school graduation and throughout their college careers. They then can return to work as registered nurses at a Cleveland Clinic facility after college graduation and licensure.
“We feel strongly that a quality education is the best way to address social inequality and promote economic mobility,” says Nick Howley, chairman of The Howley Foundation and executive chairman and founder of Transdigm Group Inc. “We want students to be able to complete their nursing degrees poised for success.”
Launched in 2017, the program was the brainchild of Kelly Hancock, DNP, Chief Caregiver Officer of Cleveland Clinic, and the holder of the Rich Family Chief Caregiver Chair, and Lorie and Nick Howley. It has been sustained by The Howley Foundation’s generosity, which has committed more than 20 million dollars to date, and other donors, such as Beth E. Mooney and the KeyBank Foundation.
“We remain committed to cultivating a workplace that embraces diversity, inclusion and equity to better serve our patients,” says Dr. Hancock. “The Howley ASPIRE Program serves as a key element in supporting these efforts. This generous gift allows us to offer this wonderful opportunity to more nurse scholars in Northeast Ohio and increases public awareness about the vital role our nurses have in delivering high-quality healthcare.”
In December 2022, the nurse scholars program celebrated its first five graduates who are now employed as full-time registered nurses at Cleveland Clinic. More than 15 students are expected to graduate from Ursuline College with nursing degrees by 2024.
The Howley ASPIRE Program also offers additional pathways for other healthcare careers, including respiratory therapy, surgical technology, and sterile processing.
Cleveland Clinic is accepting nurse scholar applications from high school juniors through Oct. 1, 2023. To learn more and apply online, visit clevelandclinic.org/ASPIRE.
Hospitals serving more patients at risk for complications during childbirth are less likely to have enough nurses to care for patients during labor, delivery, and recovery, according to a new study in Nursing Outlook.
The findings reveal one of many factors that may contribute to poor maternal health outcomes in the U.S. for the most vulnerable childbearing populations, including Black mothers and those insured by Medicaid.
Nurses play a central role in the 3.6 million births in U.S. hospitals each year. The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) issues guidelines on nurse staffing levels for maternity units; its 2010 guidelines call for one nurse to one birthing person during many parts of labor, two nurses at birth, one nurse for each mother-newborn pair during the first few hours after birth, and one nurse for every three pairs of mothers and babies after that period. These same nurse-to-patient ratios were included in the AWHONN nurse staffing standards published in 2022.
Recent data show that patients at high risk for severe maternal complications are more likely to give birth in teaching hospitals and have Medicaid as their insurer. In addition, teaching hospitals—often safety-net hospitals providing a significant amount of care to low-income and uninsured patients—are also more likely to have high volumes of births. In this study, the researchers aimed to determine nurse staffing levels at hospitals with vulnerable maternity patients, using high-birth volume and teaching status as proxies for high-risk patients.
The researchers surveyed 3,471 registered nurses from 271 hospitals across the country. Nurses were asked about staffing levels on their maternity units during labor, delivery, and recovery using AWHONN guidelines. The researchers compared nurses’ responses on staffing with hospital characteristics from the American Hospital Association Annual Survey.
Overall, nurses reported strong adherence to AWHONN staffing guidelines in their hospitals, with more than 80% of respondents saying that their unit frequently or always met the staffing guidelines. Adherence to guidelines was particularly high for specific stages of labor, including a nurse being continuously present at the bedside during second-stage labor (93.3%) and one-on-one care during epidural initiation (84.1%). However, adherence was lower for having a dedicated nurse for postpartum recovery in the two hours right after delivery (71.8%), one-on-one care for mothers with high-risk conditions (72.6%), a nurse dedicated to fetal heart rate monitoring (61.3-77.2%), and one-on-one care during oxytocin administration in labor (54.6%).
Analyzing hospital characteristics, the researchers found that teaching hospitals and hospitals with higher birth volumes, neonatal intensive care units, and higher percentages of births paid by Medicaid were associated with lower staffing guideline adherence—all of which have been shown to serve high-risk maternity patients.
“These gaps in staffing are particularly troubling for our most at-risk patients,” added Lyndon. “Many maternal complications can be prevented or quickly addressed through timely recognition of risk factors and clinical warning signs, and, when issues are identified, the escalation of care and coordination with the care team—but this is only possible when there are enough nurses monitoring patients.”
The researchers note that one possible cause of nurses in these types of hospitals having more patients than recommended may be poor reimbursement from Medicaid for childbirth services.
“Studies show that Medicaid pays hospitals less than half of what commercial insurers pay for a birth. This inequity in reimbursement creates a fiscal challenge in hospitals with a high percentage of maternity patients insured by Medicaid,” says Kathleen Rice Simpson, PhD, RNC, FAAN, a perinatal clinical nurse specialist in St. Louis, MO, and the study’s lead author. “Better funding for teaching and safety-net hospitals caring for high-risk maternity patients could support better nurse staffing.”
In addition, the researchers encourage the Centers for Medicare and Medicaid Services (CMS) and the Joint Commission to consider safe staffing requirements for inpatient maternity care, similar to CMS working to establish minimum staffing regulations for nursing homes to promote patient safety.
In the U.S, increased diagnoses of mental health issues and insufficient treatment places have resulted in many people turning to emergency departments for help. Unfortunately, this trend causes increased boarding times, ED overcrowding, and challenges for ED staff.
The increase in youth suffering from mental health issues is evident in a CDC survey. Emergency department visits for suspected suicide attempts by youth aged 12 to 17 increased by 39 percent from February through March 2021, compared with the same time in the same period in 2019.
On April 27, Sen. Shelley Moore Capito, R-W.V., introduced the Improving Mental Health Access from the Emergency Department Act (S. 1346). Supporting mental health treatment, decreasing boarding time, and addressing overcrowding are all priority issues for the Emergency Nurses Association. A similar bill is awaiting introduction in the House of Representatives.
“Many of the challenges facing emergency departments today can be directly linked to the need to improve care for behavioral health patients,” says ENA President Terry Foster, MSN, RN, CEN, CPEN, CCRN, TCRN, FAEN. “A lack of resources and treatment options often leaves individuals struggling with their mental health in the ED for extended periods, which leads to overcrowding and, frequently, acts of violence against health care workers.”
ENA President Terry Foster, MSN, RN, CEN, CPEN, CCRN, TCRN, FAEN
ENA research has shown the average ED stay for mental health patients is 18 hours compared to four hours for all other types of patients.
This proposed legislation would provide resources for EDs through a competitive grant program, allowing them to adopt more collaborative and connected care models to connect behavioral health patients with appropriate resources in their communities. It also aims to increase access to inpatient beds and alternative care settings, which will help alleviate boarding in emergency departments. Recognizing that all EDs are unique, this program would allow each ED to design solutions that will work best for them.
“The passage of this legislation could go a long way in reducing that wait time and providing a significant opportunity to establish a more collaborative approach to comprehensive mental health treatment options,” Foster says.
The VA knows that inclusion equals innovation. By ensuring that every Veteran receives care that matters to them and their whole health, VA providers and staff get to know each Veteran personally to provide better care tailored to the patient’s health and wellness goals.
All Veterans are different, and health care is not one-size-fits-all. However, diversity in VA personnel helps bridge the gap in health care disparities, an attitude adopted at the very top of their organization.
And the more diverse the VA workforce, the more tremendous success they’ll shareAnd the more diverse the VA workforce, the more tremendous success they’ll share
“To ensure a welcoming environment for Veterans, we must foster fair and inclusive VA workplaces where the experiences and perspectives of our diverse employees are valued,” says VA Secretary Denis McDonough. “The success of our mission depends on everyone being able to contribute their expertise, experience, talents, ideas, and perspectives.”
Investing in Inclusion
The Office of Academic Affiliations (OAA) plays a significant role in developing VA’s diverse workforce.
Healthcare professionals just starting in their careers can take advantage of health professions training and scholarship programs designed to increase job opportunities at VA for racial and ethnic minorities, improving healthcare experiences and outcomes for these groups.
OAA manages affiliations with more than 1,800 unique colleges and universities, including nearly 200 minority-serving institutions (MSIs). Approximately 20,000 health professions trainees from MSIs come to VA each year.
Additionally, the Veterans Healing Veterans Medical Access & Scholarship Program provides full scholarships to 12 Veteran medical students at Teague-Cranston Act and Historically Black Colleges and Universities in exchange for a four-year service obligation at VA.
Inclusion Leads to Innovation
The VA’s academic affiliations put them in a unique position to mentor and fund researchers from disadvantaged backgrounds who are motivated to make a difference in their communities, broadening career opportunities for those seeking to join the VA’s team.
Additionally, the VA recognizes that scientists and trainees from diverse backgrounds and life experiences bring different perspectives, creativity, and individual enterprise to address complex health-related problems. So the VA has developed funding opportunities in mentored research for junior VA investigators from underrepresented backgrounds. These research supplements pair early-career investigators with established VA researchers.
The supplements, supported by the VA’s Office of Research and Development (ORD), have led to research into virtual reality technology to help Veterans with mild cognitive impairment and repurposing existing drugs to treat substance use disorder, among others.
The Road Ahead
Supporting diversity, equity, and inclusion among the VA staff is an ongoing effort and a challenge that will continue in the future. As the VA celebrates its successes, they look ahead to further efforts that support and recruit a diverse workforce.
By integrating best practices into all the VA does to expand access to world-class healthcare services and to improve policies and procedures to reflect the diversity of those they serve, the VA continues to strengthen its efforts toward a safe and respectful workplace and healthcare environment.
Serving the most diverse group of Veterans in history, the VA reaffirms its commitment to hiring staff that reflects that diversity, ensuring that VA employees feel supported and providing equitable healthcare access for all.
For the second year in North America, WaterWipes has awarded a Pure Foundation Fund, which awards the department of the winning healthcare provider $9,000, as well as a 6-month supply of WaterWipes.
According to a statement from WaterWipes, the Pure Foundation Fund “recognizes the outstanding work of healthcare heroes who have made a difference in the lives of parents and babies in their pregnancy, birth, and postnatal journey.
Out of the 266 healthcare providers nominated, Alessandra Chung, a nurse for the Southcentral Foundation as a home-visiting nurse with the Nutaqusiivik program (part of the Nurse Family Partnership) in Anchorage, Alaska, won. She and the program serve Alaska Native and American Indian families living in Anchorage and the surrounding communities. In addition to an award plaque, Chung receives a $100 Visa gift card and flowers.
Chung took time to answer Daily Nurse’s questions about being this year’s award winner and how the money and wipes will help her work.
What did it feel like when you learned you won the WaterWipes Pure Foundation Award? Did you expect it?
It was a complete surprise; I had no idea my coworker, Sarah Swanland had nominated me! I was finishing my maternity leave, so it was terrific news to share with my colleagues once I returned to work. After learning more about this incredible program, I felt excited and honored to be selected.
I’m incredibly grateful and honored to be recognized by the Pure Foundation Fund. I love the team of nurses I work with and hold them in such high regard. I think any of them could have been the winner, so I am honored that Sarah thought of me.
What type of work do you do? How long have you been doing it? For what community? Why do you enjoy it?
I have been a nurse for 15 years and have been a part of Southcentral Foundation’s Nutaqsiivik Nurse Family Partnership for the last four. The Nutaqusiivik program is a voluntary nurse home-visiting program working with Alaska Native and American Indian families from pregnancy until the child is two-years-old.
The program’s overall goals are to improve pregnancy outcomes and child health and development. Still, what I love most is uncovering each mom’s heart’s desire for their children and encouraging them to become the parents they want to be. Of course, every new mom’s situation and needs are unique, so we never want them to feel pressured to approach the program in a specific way
My position is the perfect mix between maternal health nursing and psychosocial nursing. I love how holistic my role is and advocating for my patients while teaching them how to advocate for themselves and their families.
Winning $9,000 for your department, plus a six-month supply of WaterWipes, is amazing. But do you know yet how the Southcentral Foundation’s Nutaqsiivik Nurse Family Partnership will use the money?
We’re still discussing where the funds will be used to support the moms and babies in our community. This will positively impact the families we serve by allowing us to continue advocating for and empowering moms on their journeys to be the parents they want to be.
How do you make a difference in the communities you serve? What are the biggest challenges in the communities?
Every mom is different, and every situation is unique. Just being there for each mom, meeting them where they are in their journeys, and encouraging them to be the parents they want to be is how we make a difference every day in our community. When moms are supported and empowered, they are, in turn, able to support and empower their children, and that is where generational growth and change can happen. So it’s long-term change and prevention that is our goal.
What are the most significant rewards you experience by working with the people you serve?
First, serving the Alaska Native/American Indian community is an honor. I love to be able to come alongside and partner with families on their journeys. It is always a privilege to be invited into a family’s home and trusted with their stories and dreams. I’ve encountered all sorts of challenges new and expecting mothers face, and through it all, it’s always worthwhile to see them understand that they can do this.
And even when things don’t turn out as we hope, I am honored to support them through maybe that grief and loss too. At the end of the program, we host a graduation ceremony where the moms are given a chance to celebrate their growth and achievements alongside their children, and the smiles and gratitude I receive are their rewards.
What was your favorite part about this whole experience? Why are you proud of the work you do?
There were many great things about this experience, the first being that Sarah called me and told me she nominated me, and I won. I remember being in the parking lot of my PT’s office feeling torn about leaving my baby to go back to work, and it was so encouraging for her to tell me this.
My second favorite part was making the video; one of the moms I worked with was willing to participate. That was special. I’m proud of my work because it’s what holistic nursing is all about–truly meeting the patient where they are and educating and advocating for what they want for themselves and their families.
Being a nurse in Alaska, working with the Alaska Native population is the best. I wouldn’t want to be a nurse anywhere else.
