New to site, veteran to LE

[NikkiO]

Below is my initial post but after posting, i did read comments about women who have had successful pregnancies. My fear has decreased a bit:

This is the first support site I have ever visited even though I have had lymphedema since age 16 and am now just one month shy of 31. I have primary LE and although it's onset was at age 16, I wasn't diagnosed until age 20. It took almost four years, 8 doctors and several misdiagnoses until a radiologist at UCLA confirmed primary LE after conducting a lymphangiogram.

I began to see a specialist in Santa Monica and she was such a blessing. I moved to Texas four years ago and am now living in Canada as I was just married in Mexico at the end of July. I have read several of the posts on this site and spent most of the afternoon and evening crying. For so long, I've felt so along in dealing with LE. My family and friends attempt to be supportive but can never truly understand the physical, emotional and psychological toll it has taken on me. I grew up playing soccer and swimming and had aspirations to join the military after college. It is one thing to decide that you don't want to do something but when the choice is taken from you, it hurts more than you expect. I always appear so tough to my family and friends but inside I have a been in so much pain for the past ten years that even as I'm typing this, I can't stop crying. I'm just so glad to know that I'm not alone and that it is ok to be upset, I've always tried to see the positive and tell myself "it could be worse". I know it could be worse but we all deal with our own pain from what we experience and reading some of these posts just let me know it is ok to be upset that I have LE, I just can't let it consume or define me.

I just found out today that I am pregnant and I'm so scared. It wasn't planned but we also did not go through great measures to prevent it, obviously. Lol.
I've been lost for so many years just trying to figure out what my calling is in life. I am a college graduate, I've traveled and didn't get married until four months shy of my 31st birthday, I had a career in a tough field and I'm now living in another country. So what's next? I suppose being a mother is the next chapter in my life. So why does it frighten me so? I have been told by so many that I should NOT have children because of my LE and so I'd resigned myself to the fact that I would never have any biological children of my own. If there are any mothers who can offer advice or some words of comfort, please do. My apologies for the lengthy post but unleashing ten years of anger, pain, joy and a whole mix of emotions is quite a lot.

Anyone with words of wisdom or comfort, I look forward to reading your responses. Thank you!

[Ann]

Your posting will remind many people of when they found Lymph Notes. Our goal is to provide information to help and, there is information here to help you.

Go to the Table of Contents to find the article titled Pregnancy and Primary Lymphedema. It contains practical information to help you through your pregnancy. Your doctor may also be interested in it too.

If you are interested in the genetics of primary lymphedema, there is an article on that too. If your baby is a boy, he is unlikely to inherit the condition since it is mostly transmitted to girls.

After your baby is born, work on keeping your weight down, and getting exercise. This will help you control the lymphedema.

Best wishes with your pregnancy!

Ann, for the Lymph Notes Team

[LymphedemaGirl]

Some say that Lymphedema is inherited, but honestly, I have heard about so many that had no history of Lymphedema in their family, my own included. Also, if your husband hasn't got it, what are the chances? Even if you have a baby with lymphedema this baby will still be able to have a wonderful life and it will be cared for much better than millions of other Lymphedemapatients out there, because it will be dianosed and treated from the beginning.
I talked about this with my therapist a while ago. Not that I even have a man, but who knows, I might just make it before it's too late, and I was wondering about it. She said to take it easy and certainly don't refrain from having a baby because of this.
I recognise your emotions reg. this depressing desease and I am glad you found this site. As you know now, you are not alone, there are many of us out here.
I so second what you are saying about dealing with our own pain from our own experience. In the beginning people would tell me "it could be worse" or "at least it's not cancer" and it would make me so angry, because as true as it is, it is bad enough and like you say, we all deal with our own pain from what we experience.

[Roger]

Primary lymphedema has been around for a very long time. The difference is that doctors failed to recognized. Many families has female members who were considered to have fat legs. In other situations, the swelling was blamed on a sprained ankle.

The diagnosis, and treatment, have been greatly improved over the last few years. Now genetic studies have been done to identify the gene that causes PLE. There are also several other conditions that involve swelling of the feet and legs that develop at different ages.

If you are seriously interested in this topic, go to the Lymph Notes table of contents and you will find a listing for an article about the genetics of PLE and it includes the address where you can go for testing.

Cheers, Roger