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Information on Lipedema

Lipedema is a hereditary disease and therefore has nothing to do with your lifestyle or diet.

A common misconception is to believe that someone with lipedema is simply just “fat”. Due to todays society’s obsession with being skinny, having lipedema will cause many to wrongly judge you. They might believe that you are lazy, eat junk food and that you just need to “get it together!”. You can see the judgement in their eyes when you tell them that “no, you actually don’t eat that much, and that you actually eat rather healthy”. The might roll their eyes and say that “well if that was the case, wouldn’t you be skinny then?”. However as we know by now, this is not the case for someone with lipedema. The bloating and weight gain associated with lipedema has -nothing- to do with lifestyle, it point blank a disease. The sad part to this is the sheer amount of people who do not know they have lipedema who try in vain to to get fit and skinny, but alas how hard you try, nothing seem to work. If you feel like this might apply to you, then you might just have lipedema, so please keep on reading.differenttypesoflipoedema

Facts:

-Lipedema is a chronic, hereditary disease
-It is estimated that about 350 million women worldwide have lipedema. Many without knowing it.
-It is almost always women who get the disease
-Lipedema is characterized by an abnormal unnatural accumulation of fat cells in depots, a symmetrical body. Most often from the waist down, Lipedema can also occur in the arms if you got type 4.
-Lipedema is characterized by the accumulation of fat cells that occurs in an unusual pattern.
-As the disease progresses it becomes more painful, more swelling, and and even your mobility deteriorates. Many will have trouble simply walking around.
-With treatment, you can get shrink the size of it and halter the swelling.
-Characterized by pain in the soft tissue. The pain can occur at anytime, but is more prone to hurt with movement or touch.
-Fat Pillows/depots often develops on the inside, outside and under the side of the knees, inside and outside of the thigh and around the ankles.
-Can cause pain in the joints, especially knees
-General fatigue and exhaustion are common
-Diets have no effect, it will only affect the areas not affected by the lipedema.
-Lipedema is also characterized by a distinct demarcation around the ankle. Swelling goes down to the ankle and then abruptly stops. Ankles can be naturally slim.
-Lipedema usually develops in puberty and at other hormonal changes (Can Oral contraceptives play a role?)
-You often develop lymphedema when you got lipedema. This is because the fat-cells and swelling injures the lymphatic system. If this is the case you are in the 4th stage of the disease development. This is called lipolymphedema.
-Lipedema is characterized by being very sensetive to touch, pain and easy bruising. It can be very painful.
-You can not diet or exercise away the disease, it is not a weight issue. The only way to cure the disease is proper treatment.
-For someone who has gone for years with undiagnosed lipedema, the accumulation of fat depots will spread throughout the body.
-A large amount of cellulite  is a clear indication of lipedema. Also if your body is much greater from the waist down, eg: if your waist is much smaller compared to your lower-body this might be a sign of lipedema as well.
-Fat deposits can be fibrotic (harden and become difficult to deal with)
-As with lymphedema, you might loose the elasticity in your skin
-Treatment for lipedem is (at least in Norway) the same as lymphedema. See my earlier post about lymphedema HERE

There are five types lipedema: Type 1: which is lipedema just around the buttocks. Type 2: which is the butt, hips and thighs down to the knees affected, Type 3: Is lipedema from the buttocks down to the ankles, but the feet are not affected. Type 4: when the arms are affected in addition to the legs. Type 5: is when only the legs are affected.

With lipedema like most diseases, the sooner you start treatment, the better. So if you think you might have it, get to a doctor and get a diagnosis as soon as possible.

There are four stages in the development of the disease.

Lipødem stadier
Lipedema stages

Lipedema stage 1: The skin is soft and smooth. Responds well to treatment. The swelling increases during the day but subsides with rest and by keeping your feet high up while resting. (Just like lymphedema)

Lipedema stage 2: The skin has a surface that resembles cellulite. Lipomas may develop. The swelling increases during the day and resting with your feet high no longer has any significant effect. Some respond well to treatment. Dermatitis and Rosen can occur. (just like with lymphedema)

Lipedema Stage 3: The tissue becomes hard and possibly fibrotic. The swelling is constant. Skin, fat depots and tissues have started to «hang». Treatment is now more difficult.

Lipedema stage 4: swelling is constant, fibrotic tissue and/or lymphatic filariasis may occur. Skin, tissue and fat depots hang more visible. There is more swelling. Since the lymphatic system is also affected you know have lipolymphedema. Treatment is now even more difficult. Many different body types may develop lipolymphedema. Lipolymphedema can also in some cases develop from chronic venous insufficiency. Read more here

There is a great documentary on this disease, It must be ordered HERE. (Press link)

Here is little sneak peek:

If you are early in the early stages of lipedema, you might just think your thighs are a bit round. Not everyone with lipedema are even considered ‘big’. However if you even suspect you -might- have it, check it out as soon as possible. Early treatment makes everything so much easier. The picture under here, shows an early stage lipedema also called “Saddlebag tighs”

Ridebukselår
Saddlebag tighs

There is unfortunately very little research done on lipedema. However more knowledge and awareness around the disease over the past couple of year has given us some newfound understanding of the disease. Lets hope that even more physicians finds the disease interesting enough to research it so that more patients can get the correct diagnosis.

Nobody knows for sure what actually causes lipedema. It might be easy to believe lipedema is a lifestyle disease. Nevertheless, we have proof that the disease can be traced back to 1500 BC. The female pharaoh Hatshepsut organized a large expedition from Egypt to land they called Punt. Queen of Punt supposed had an abnormally large buttocks and legs. A relic from Hatshepsut’s tomb, the temple in Deir El-Bahri, shows the queen of Punt. The picture of the Queen of Punt looks very much like someone with untreated late stage lipedema.

Et relieff som viser dronningen av Punt
The queen of Punt

It is important that you know as much as possible about the disease when consulting with your doctor. This is because she might not know much about the disease, therefore you have to take it upon yourself to guide the doctor.

Doctors in Germany and the US have developed a special fat-suction technique which removes only the lipedema. They believe that this technique might finally be the cure for lipedema.

 

About how to diagnose Lipedema find out more HERE:

 

 

 

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