What is it like to live with Klippel-Trenaunay-Weber Syndrome?

in #health6 years ago


Hello Steemians!

This time I want to tell you about the Klippel-Trenaunay-Weber Syndrome, which is a pathological condition that I have had since I was very young.

First of all, let's see the definition of this syndrome to enter the subject. According to this page The Klippel-Trenaunay-Weber syndrome is:

Is characterized by a triad of port-wine stain, varicose veins, and bony and soft tissue hypertrophy involving an extremity.

In my case, this disease resides in my left leg, and goes from the top of the buttock, to the tip of the ring finger. I have a kind of tangle of veins a little larger than normal that run the entire leg.

This pathology is quite strange and unknown by many doctors in Venezuela. I was diagnosed with this disease at age 5 after realizing that playing ball, hiding or racing, made my leg swell and give me severe pain. I remember that in my childhood my parents were in search of remedies, surgeries or some kind of cure to help solve the problem, but unfortunately this disease is incurable. So far there is only one treatment that reduces a little pain and prevent the veins from growing, which is quite expensive and is only done at the Hospital de Clinicas Caracas in that city, so it is a bit complicated to follow up on that treatment since I live in an island that is a little away from the capital.


Well, the million dollar question, can you lead a normal life with this disease?

The answer is YES! If you can lead a normal life, but with certain limitations, it is true that in some cases it costs a little, either because of the swelling, pain or discomfort that arise from standing or sitting for a long time. Doing certain activities such as long walks, working long hours or doing a high intensity sport, can cause much greater discomfort, however, I think you have to face it with enough encouragement and forget that it is an obstacle for your life, it's just a matter of looking to fit into the activity that makes you feel comfortable and happy, in my case I chose music because I feel that it's perfect, it's something I like to do and I do not usually spend a lot of time standing in my presentations . Sometimes I even forget that I have this disease and some people do not even realize that I have it until they see me limping.

I think the causes of this pathology are unknown, there are those who say it is something hereditary, others say they are mutations in the gene, the truth is that I still do not know anyone who has the same condition that I have, I think it is a disease It affects very few people.

To conclude the post, here I leave a picture of my foot, which is the part of my body where this condition is most noticeable.

Remember that there is no excuse for not growing up in this life.

See you later!

P.S. Sorry for the translation, but I wanted to share it with you :D