Molly Sleigh, OTD, OTR/L, CLT-LANA, is an expert in cancer rehabilitation, survivorship care, lymphedema, and Lipedema management. She has led national guideline initiatives for establishing the Standard of Care for Lipedema through the U.S. Lipedema Consensus Panel and Lymphedema Coalition. Sleigh serves as adjunct professor at Rocky Mountain University, serves on the Medical Advisory Board for Fat Disorders Resource Society (FDRS), is a faculty member of the American Vein and Lymphatic Society (AVLS), and served as a member of the Lighthouse Lymphedema Network Board of Directors. She is based in Colorado Springs, CO.
We asked Dr. Sleigh about her career journey, how her profession helps people with Lipedema, and her thoughts on research and the U.S Standard of Care for Lipedema. Here’s what she had to say:
How did you become interested in Lipedema?
I've worked with Lipedema and lymphedema patients as well as oncology rehab populations for most of my career, which spans 25 years. I fell into the world of lymphatic medicine by accident. I started my career as a graduate working in a hospital setting and was recruited for a lymphedema outpatient program. I was hooked on lymphatics from the minute I started, so much so that I took the Lymphology Association of North America (LANA) exam and became board certified in 2005.
When I started, I did not know what Lipedema was. I was getting a lot of lymphedema patients whose fat tissue felt different. This subset of patients didn't respond the same way to therapy – their side effects and complaints were also different. As I studied available research, I realized that this subset of patients had Lipedema.
More than 20 years later, most women continue to go undiagnosed. During my experience, I've had only one or two women come in with a proper diagnosis of Lipedema. Most Lipedema patients are initially referred by a vein specialist and diagnosed with chronic venous insufficiency or lymphedema or other conditions.
What is occupational therapy (OT) and how does it help Lipedema patients?
Occupational therapists promote health and well-being in individuals through participation in meaningful activities. We rely on several frames of reference and approaches to reduce impairments and dysfunction within a certain client population. OTs use manual techniques to decrease pain, nodular tissue, and fibrosis to improve mobility, function, and quality of life when working with patients with Lipedema.
Occupational therapy is unique because we can apply our knowledge not only to prevent disability, but to manage health challenges as well. We know there are many psychosocial side effects of Lipedema that affect the quality of life. OTs also provide support materials for self-care, offer nutritional guidance, and promote healthy lifestyles.
At what point in the patient journey do you, as an OT, first see a person with Lipedema?
By the time they come to see me, patients have seen several different healthcare providers, at least two, sometimes three. When I perform the evaluation, 99% of the time I'm the first person to mention the word Lipedema to them. They're always shocked because they've suffered with Lipedema for so long and no health professional has ever suggested that such a condition exists.
It can be a very emotional experience for women because a burden has been lifted. They realize it's not their fault and that they're not responsible for their condition. While that's energizing for some, it’s an emotional letdown for others. I spend extra time with newly diagnosed patients to allow them to understand the diagnosis and highlight how we'll handle this.
What is a therapist's role in helping a Lipedema patient get a diagnosis?
We are not licensed physicians and are not allowed to diagnose, but we help patients along with the process. When I'm evaluating a patient, I do a thorough write-up for the physician, including the symptoms they are presenting with and what stage they are at. The physician must sign off on that evaluation – it's a legal rule. That's very helpful in obtaining a diagnosis.
An important part of our job as therapists is to help patients with this process because most physicians are unaware of Lipedema. I have found that using this method is very beneficial because at least it opens the door for that patient to have a discussion with their doctor and get a proper diagnosis.
Every patient has a different comfort level, and some don't have a good relationship with their physician. Unfortunately, that's part of the culture of our healthcare system right now. Providers are overloaded with many patients. They may not be able to devote the time necessary to learn new things or be open to new ideas because they must work to see a high volume of patients. I try to make it easier for the patient by giving them information they can hand to the doctor when they go in for a consult.
How can patients find local therapists and is a referral from a doctor necessary?
Patients need a physician to refer them to either an occupational therapist or a physical therapist. I recommend that patients do their research first and visit websites that list certified lymphedema therapists and find one in your area. A good one to start with is LANA. To maintain LANA certification, a therapist must complete a certain number of yearly credit hours. You can be sure that when you're seeing a LANA-certified therapist they're up to date on current information.
When you contact the organization, ask for a therapist who has experience with Lipedema patients. Speak to that therapist and if you’d like to work with them, let your physician know and they can write the referral.
Pain is a requirement for a Lipedema diagnosis in some practices around the world, but not all. Do your patients typically experience pain related to Lipedema?
Many patients do, but not everybody feels pain. There's a lot we can do in the clinic to reduce pain. Using hands-on, manual techniques to reduce tissue fibrosis seems to help with the pain. We also use tools, such as cupping, and the use of IASTM (Instrument-Assisted Soft Tissue Mobilization) to soften up and loosen fibrotic tissue or nodules. Reducing nodular tissue seems to have a positive effect on pain. It's important to develop a home program to manage pain because Lipedema is a chronic disease.
What do you think about the current state of research in the Lipedema community?
Many recent studies are very promising. I would like to see more studies centering on the financial burden of Lipedema. A recent survey by Chantelle Clark looked at the occupational experiences of Lipedema patients. Among respondents between the ages of 41 and 50, at stages one or two, 70% held a job. At stages three and four, only 50% were employed. More than a quarter (27%) of the women in stages three and four lost their job last year because of Lipedema – and that is huge.
There’s a real need for more research studies to better understand, treat and support women with Lipedema. We need studies that can identify impairments, problems, and the side effects of Lipedema across the stages, and figure out how to meet the patient's needs in terms of support for these issues.
At the recent Fat Disorders Resource Society (FDRS) conference, you gave a presentation on intimacy. What advice do you have for women with Lipedema in terms of intimacy?
Overcoming barriers starts with practicing self-acceptance – the first relationship starts with self. If that relationship is off, then there's a high propensity that all other relationships will be off, whether they're platonic or romantic. Practicing self-acceptance is key.
You also must decide that you are worth loving because you are. Loving yourself is a gift that you give to yourself. It's also important to be intimate with partners who think you're sexy because of your body, not despite it. Replacing negative thoughts with positive affirmations is helpful. Get the help you need from a trusted counselor or therapist to learn to love your body, your mind, and your spirit.
You helped to develop the Standard of Care for Lipedema in the U.S. Why was it important to create these guidelines?
It was important to validate the patient experience, inform medical providers, and provide guidance within the U.S.
In the future, we will develop a standard with updated research and information. While it's important to publish these guidelines, we need to disseminate the information within the medical community. There are many ways to do that, whether through social media or educating general practitioners.
OBGYN physicians would be a good place to start because they see women. What better place to disseminate the information about Lipedema? There's room to expand in that arena, working and sharing more information with the OBGYNs.
Information presented on the Lipedema Foundation website should not be considered, or used as a substitute for, professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.