An illness or disease that is labelled as rare yet affects about 11 per cent of women is often overlooked because of a lack of awareness. June is Lipedema Awareness Month to educate women that they may have the illness, because many women with lipedema are misdiagnosed with general obesity.
The illness is even rarer for men. In the small percentage of men who get it, it is suggested they appear to be oestrogen dominant.
Lipedema is a long-term, chronic disease of fat and connective tissue that builds up in legs, hips, bottom and sometimes arms. It affects both sides of the body equally.
Lipedema fat is encapsulated with fibrotic tissue creating nodules of fat. The nodules can feel as small as grains of rice, or like peas or marbles. They can also be seen and visually can have a “mattress effect”. The skin surface is soft, but just below the surface, the nodules can be felt as harder areas. The nodules are important criteria for diagnosing lipedema. Other symptoms are easy bruising, pain, the feeling of extreme heaviness, swelling and loss of mobility.
Women of any weight may develop lipedema and the fat associated with it is resistant to traditional weight-loss methods.
Some women who have lipedema also have Ehlers-Danlos syndrome, which is another connective tissue disorder that affects the skin, joints and blood vessel walls.
The five types of Lipedema, this highlights the locations of Lipedema. Photo / Supplied
“Lipedema can cause women to put on a lot of weight, which results in body shape changes,” says Fiona O’Brien, who raises awareness of the illness through the Lymph Info Trust. “This can occur in times of puberty, pregnancy, menopause, hysterectomy or other medical issues, which result in intense reproductive hormonal shifts. It can be a couple of stone — one stone is 6.4kg — in a few months. This is to do with the oestrogen in the body and they don’t quite understand the connection between the hormones and why or how it does all of that yet, but it is one of the clues for women for when their lipedema journey started.”
Some women have experienced changes with going on the contraceptive pill.
For some young girls going through puberty with the stigma of being big is emotionally hard. This and other stages in life can cause a lot of people with lipedema to suffer from depression and anxiety, and to trying all sorts of weight loss treatments that can lead to developing eating disorders, including anorexia and bulimia.
Certain foods can cause painful inflammation. “If I eat high carbohydrate foods, my legs get really sore, which is a reaction to the inflammation that the body is fighting,” says Fiona.
After a diagnosis, women start to eliminate certain foods from their diet and sometimes certain medications to reduce the pain and swelling in their legs. With the inflammation, the legs swell causing the legs to get bigger, heavier and cold to the touch.
The exact cause of lipedema is unknown. But the condition runs in families in 20 to 60 per cent of cases. Researchers around the world are unsure which genes cause it.
Talking to someone within the family, regardless of gender, helps to spread the message within the extended family — and can help find the link to lipedema. Fiona says members of her family had lipedema, which led her to go to her doctor.
Fiona hopes a blood test to diagnose lipedema will come with research.
If the correct diagnosis is missed and the disease goes untreated, it progresses, leading to a lack of mobility.
The Lymph Info Trust has attended general practitioner (GP) conferences in the past and developed a work plan that needs funding to raise awareness.
Lipedema progresses from stage 1, when the skin looks normal, but you can feel something like pebbles under your skin. You can have pain and bruising at this stage. At stage 2, the skin surface is uneven and may have dimpling that looks like quilted stitching, a walnut shell or cottage cheese. At stage 3, legs can look like inflated rectangular balloons and you have large folds of skin and fat. Fat may stick out, making it hard to walk. stage 4, is a more exaggerated progression of stage 3. From stage 2 onwards the lymph system has to work a lot harder and patients can have lipedema and lymphedema at the same time, called lipolymphedema, where the lipedema fat exerts pressure on the lymphatic system.
Lipedemawas first diagnosed in the 1940s at the Mayo Clinic in the US. It was only in 2020 that it was listed in the World Health Organisation as a disease.
“The fat in the legs is very painful and some women find when they are diagnosed and start to understand what the symptoms are that they have been carrying pain in their legs but have just lived with it for so long that it has become normal. Without treatment within the leg, the tissue can become fibrotic,” says Fiona.
Diagnosis comes down to women identifying it for themselves and presenting it to their doctors.
“We need the doctors to look at our legs, we need them to see us without our top layer of clothing because when you look at our legs properly and dimpling of the skin then you can understand that there may be a different diagnosis than obesity.”
It is important for lipedema patients to look after their skin and moisturise it to avoid breakdown, which causes wounds. Another therapy is manual lymphatic drainage (MLD), which a trained therapist can do, but is outside the public system.
Wearing compression or using compression pumpscan be very helpful to those in more rural locations, where is it more difficult to access a MLD therapist, as it performs a massage to help clear lymphatic fluid. The pumps also empower the patient to create a daily self-care and management routine.
Vibration training — Body Buzz Te Awamutu owned by Marty Eyre has machines — is also very good for Lipedema.
Exercise is also important; however, many women cannot exercise because their body shape does not allow it. Getting into a pool is the best because the water acts as a compression agent, stimulates the lymph system, and lends to low-impact activities that protect the joints.
Some women get liposuction overseas to remove the fat nodules. This type of liposuction is more specialised and is very different to regular liposuction.
What regular fat within the body looks like. Photo / Supplied
What Lipedema fat looks like. Photo / Supplied
Fiona says it is a hard journey for those with lipedema.
”They have said in the past it is a rare disorder; however, 11 per cent of women do not suggest it is a rare disorder — it is just rarely diagnosed.”
This is what drives Fiona and others like her to make the public more aware of lipedema to start more conversations.
Facebook groups support sufferers “but as the diagnosis rate is low — people wouldn’t even know to start looking”, says Fiona.
Fiona talked with groups in Te Awamutu last year about the condition. She also travelled to Kāwhia recently to speak and provide education and understanding.
Fiona hosted Tribe as part of the Lipodema Awareness Month meet-up at Zenders, off the Hamilton Expressway, last Saturday.
Fiona is available to talk with groups and can be contacted via lymphinfonz@gmail.com.
