Born with Lymphedema

[Benita88]

I first discovered I had Lymphedema when I was 12 years old. Most of my life I thought it was due to my twisting my leg. The doctors did not really know much in the 70's. It wasn't until I was in my 40's that I discovered I had an Inherited disease. Now after developing a Uterine Fibroid, it has affected my leg the way it never did through out my life. My leg is 3 times the size it should be. I too hope to have the SAPL surgery in the future.

[Lynora]

Hi Benita88 - are you in the UK? Have you been given advice about care and management of the condition, while you wait for possible surgical intervention?

[Benita88 in reply to Lynora]

I have gone thru the basics, I have a compression Machine and I wear compression stockings. I am suppose to go back to the venous doctor to do a series of tests. But I already know it is solid waste (protein) not water. I know I need the SAPL surgery to get my life back. I live in NYC. I know there is a gentleman who performs the procedure in California. That is my big goal.

[angie10 in reply to Benita88]

Hi Benita88. Just out of curiosity, what kind of compression machine do you have and has it been working for you?

[Benita88 in reply to angie10]

The compression machine I have is portable. It is a Neomedic Air compression&Vacumm Theraphy machine. WWW. air.1000.com The model name is Power Press Unit Class 2 Bf type equipment. The machine is compact and very strong. I am suppose to use it 2x a day but I will admit sometimes I have no time.

[yorkiebee2 in reply to Benita88]

Hope you get your procedure in California x

[Getreal in reply to Benita88]

Benita, can you give me info where surgery is performed in California? Thank you. I live in Denver, Colorado.

[Lynora in reply to Getreal]

You could contact the National Lymphedema Network in the US - they have details of surgeons on your side of the world. lymphnet.org - also lymphedemapeople.com for patient advice.

[Getreal in reply to Lynora]

Hi Benita, Mine was diagnosed when I was eleven. I had kidney stones and terrible pain and my mother did not take me to the doctor. I only realized that I had stones when I got the problem in my fifties again. I was always on a vegan diet after I left parental home. Maybe diet spared me. I was also studying dance every day and a performing singer. I was always self conscious about my legs as a teen.

[AnneBury]

I hope you have the treatment you need and get brilliant results. My lymphoedema first showed up at the same age as you, in one leg. Then nearly 20 years later in the other. Sound like I am a little older than you. I was years before I got a diagnosis and proper advice and that was due to a chance encounter with a colleague of a leading lymphoedema specialist here in the UK. When I was 12 I was in hospital for 4 weeks for tests and observations as to why I had a swollen foot / leg (from knee down). After 4 weeks no-one was any wiser and we had a holiday booked so I was let out. Shortly after leg was put in plaster for 6 weeks to see if lack of movement would work. Funnily enough....... no difference. Then my younger brother got a swollen leg/foot. Then we just got on with life. No idea when we actually knew what it was. Also have a younger sister with it and another much younger brother without it (ie he has a full set of working lymphatics).

[Benita88]

I did not discover what it was until I met my surgeon for the Fibroid. she told me what it was. The doctors during the 70"s had no clue and said I would lead a normal life despite my legs being uneven. Ocasionally it would swell a little and I only had minor problems with some pants. But now as I am older it is a horror. I definitely need the surgery because nothing is helping it get better. I did a lot of research last year and found a solution. doctors tend to say there is no cure. There isn't but you can improve your life living with the disease.