2023-06-15 13:36:45
Delphine, a smiling and ultra-dynamic quarantine, came to the newspaper to tell us regarding her life with lymphedema. A disease caused by poor circulation of the lymph in his legs. Result: Delphine has fat legs, we sometimes speak of “post leg syndrome”, whether with lymphedema or lipedema when it comes to an abnormal accumulation of fat.
How did Delphine manage to put a name to her syndrome? What was his journey? How does she see it today? She was kind enough to answer all our questions and we thank her for that.
The text below is the transcript of the interview in the video above.
Delphine, can you tell us what you are suffering from?
I suffer from a primary lymphedema of the lower limbs. It is a rare disease. This is due to a malformation of the lymphatic system. It is a malformation that I have had since birth. So that’s primary lymphedema. And secondary lymphedema is also distinguished which is due to surgery like breast cancer, like uterine cancer. And it’s due to lymph node dissection. The fact of having a malformation of the lymphatic system or having touched the lymph nodes causes edema on the affected limbs. So in fact, it’s exactly the lymph no longer circulates and settles in the tissues. So in fact, it makes the limbs swell.
How did the disease start?
I started having the first symptoms when I was 15. So, when I’m a teenager, when you build yourself up, when you realize that you’re completely different from girlfriends and you can’t wear trendy jeans, you can’t wear boots. It’s very hard. Me, I have suffered harassment with this disease. So it’s complicated. And the problem is at 25, when I get pregnant with my first child. My legs are exploding all of a sudden. I can see that there is something wrong. I can clearly see that my legs are swollen, that they have changed in appearance. And there, I go to see doctors, doctors, angiologists, and everyone says to me: “Listen, ma’am, it’s in your head. At some point, it’s venous problems. Elevate your legs. You’re fat, you have to take care of yourself”.
At no time do we listen. That’s what I want to convey, is that we don’t listen to the patient. And I only got the diagnosis when I was 42. When the angiologist took my diagnosis seriously in 2018, he said to me: “It’s a shame that we didn’t take care of you before because if we had taken care of you before, you wouldn’t have the legs. so swollen today.”
Psychologically, how did you experience this diagnosis?
It’s a hell of a slap in the head. Because, in fact, you realize that there has always been something wrong. Nobody listens to us, nobody takes us seriously and at some point, we are even told: here, take antidepressants because you are simply making us depressed. That, it’s really something that hurt me a lot because when I was 42, I said to myself: Oh no, I wasn’t crazy. Ah well yes, I had something and that is very complicated.
It’s complicated to live with your family. It’s complicated to live with your husband, with the children because the husband and the children don’t understand since it’s an open word. But the doctor said you have nothing, Why would the husband take you seriously by telling you you have something since the doctor said you have nothing. The parents, the brothers and sisters don’t understand: why are you telling us that you have something since the doctor said you have nothing anyway? All the time I was wandering, I had an anger that was monumental, that was incalculable.
Why would the husband take you seriously by telling you “you have something” since the doctor said you have nothing!
When there was a name on pathology, there was a real deliverance. But paradoxically, when I had my diagnosis in 2018, I fell into depression. Because in fact it was, it was a blow, everything dropped.
As a woman, we are very touched by the aesthetic side. I don’t wear shoes anymore, women’s shoes anymore. I have sneakers. Fortunately, today sneakers are in fashion. But I wear pants that are rather wide because the more tight pants you put on a lymphedema, the more the lymphedema increases. So no, on the clothing side, I feel like I’m not always a woman anymore as I would have liked.
I have no pain, it’s tiring, it’s tiring because it’s a weight. You feel like you have two balls on each ankle and you have to wear them regularly.
What treatments are you receiving today?
You must know that there is no cure for lymphedema. Once you have it, it’s for life. On the other hand, there are indeed things to stabilize the lymphedema and to get better. Already, there is the health professional who becomes your best friend, who is the physiotherapist who intervenes in your daily life when everything is going well, twice a week to perform lymphatic drainage. That’s already the first thing. Then we wear lymphatic support stockings, therefore, that is to say knitted vertically and worn all day that are made to measure. And at night: Me, I wear bandages. Compressive bandages precisely to prevent the lymph from coming back into the tissues during the night. So you have to know that I take 40 minutes to do the two bandages and that means that in the morning, it takes regarding half an hour to remove the two bandages and followingwards, it takes 20 minutes to re-roll all these bandages .
What is the coverage for this care?
It is very very very badly reimbursed. You should know that lymphedema is absolutely not recognized in France. So that too, that’s also why I really try to carry this word. Spa treatments are not covered by Social Security. You should know that if you want to be supported by a spa treatment, you must mark a phlebology spa treatment. Since I have been in treatment, I have stabilized the situation enormously. I even improved it. The treatments work. It’s time consuming. Yes, it takes time, but it works. Me, I lost in space of 4 years – now that I have my diagnosis – I lost almost 10 cms of circumference of leg.
Tell us regarding the association in which you are involved
I joined the AVML association, which is a national association. It is the association “Living better with lymphoedema”. The office is in Montpellier and in fact, when we find volunteers, each region opens its delegation. SO so as to stay with the same doctor, so as to stay with the same dialogue, with the same words to unite our forces instead of each of us being divided on our side.
In fact, today, on social media, I want to show that we can live with this pathology. You can do a lot of things, you just have to adapt. It’s okay, but once you’ve adapted, the body is quite capable of going through things like everyone else.
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