Lymph Girl Stories: Emmie

Lymph Girl Stories

Emmie's Story

Even though I wish nobody has to suffer from lymphedema, I'm glad that this next Lymph Girl filled out my questionnaire. She hails all the way from South Africa. This is a world-wide disease that should not be dismissed or ignored by the medical field and the media. I'm hoping these stories give hope to us Lymph Girls and Guys alike. If enough of us share our stories, maybe there will be some attention put on lymphedema.

Here is Emmie's story:

Lymph Girl: How old are you?

Emmie: 13

Lymph Girl: What state and/or country do you live in?

Emmie: South Africa

Lymph Girl: Please tell us a little about yourself.

Emmie: I love cooking, baking and reading! I hate shoe shopping! I'm still in primary school and play for our netball team. I have lymphedema in my left leg

Lymph Girl: What type of lymphedema do you have?

Emmie: Secondary Lymphedema

Lymph Girl: What stage of lymphedema are you in?

Emmie: Stage 2 - an increase in the swelling and a change in the tissues. Elevation of the limb will not reduce the swelling. The tissues become increasing firm due to fibrosis. Fibrosis is the formation of fine scar-like structures within the tissues that cause them to harden. Pressure against the limb produces only a slight indentation or in indentation at all. The tissue changes at this stage increase the risks of even greater swelling, fibrosis, infections, and skin problems.

Lymph Girl: Where does lymphedema affect you on your body?

Emmie: My left leg from my toes to my thigh, although I swell in different places sometimes.

Lymph Girl: Do you know how you got lymphedema?

Emmie: I had a very rare melanoma and they had to remove a lymph node in my groin so that's how I got it. It then turned out that it wasn't cancer so I was stuck with lymphedema.

Lymph Girl: At what age did the lymphedema start showing it's effects?

Emmie: I was 11 when my foot began to swell.

Lymph Girl: Before being diagnosed with lymphedema, what were doctors telling you in regards to your symptoms?

Emmie: Doctors kept telling me that I had hemihypetrophy. Which that is simply just one limb bigger than the other.

Lymph Girl: How long did it take for doctors to diagnose you with having lymphedema?

Emmie: 6 months... guess i'm lucky! 

Lymph Girl: Were any special tests done to help diagnose lymphedema? If yes, what tests?

Emmie: Nothing... I just got sent to a lymphedema doctor.

Lymph Girl: Have you been through lymphedema treatment/therapy? If yes, how long was treatment?

Emmie: I went for therapy 4 days a week for 2 hours for 2 weeks then I had to go 3 times a week for 1 and a half hour for 2 weeks then 2 times a week for one hour and then every 2 weeks for a few months.

Lymph Girl: What did they do during your treatment?

Emmie: I had a manual lymph drainage performed and wrapped.

Lymph Girl: Do you wear compression garments? If yes, what kind and how much is the compression?

Emmie: I wear mediven thigh high open toe class 3 and best of all, it's PURPLE!!! 

Lymph Girl: Does your insurance cover your treatment and/or compression garments?

Emmie: I honestly have no idea... my father does that thing...

Lymph Girl: Do you do anything special to help with the swelling?

Emmie: I eat special, some foods make me swell up... and I take tissue salts for lymphatic drainage.

Lymph Girl: Does having lymphedema cause you pain?

Emmie: Yes! I would get pain in my groin and under my arms and I get ill a lot more.

Lymph Girl: Have you ever had a cellulitis infection? If yes, what happened and do you know how you got it?

Emmie: Yes, I had it once and I have no idea how I got it but it made my swelling much worse.

Lymph Girl: Do you do any exercises to help manage lymphedema? If yes, what type of exercise and how many times per week do you do them?

Emmie: No... I do MLD instead of the exercises.

Lymph Girl: How has lymphedema affected your life?

Emmie: Well, I miss having my old life, where you're biggest worry as a 13 year old girl is how your hair looks, not how big your ankle is swollen.Where buying shoes wasn't about the strap that goes around your foot that's wrong but about the color. I miss the days when I could just run around and be me and not worry about my leg and the swelling and getting it hurt! I miss the days when people asked me "How are you?" instead of "How is your leg?" I miss the days when I only wore bandages to look like a mummy or to fake an injury! I miss going to the shops with my mum, having a ball, walking around and looking at shoes for me and not worrying about my leg and how it is swelling up! I miss being the old me... But the thing I like is having a medical excuse for not doing PE (When I'm lazy) and sometimes just sometimes, I realize the real purpose in my life and maybe just maybe I like being a Lymphie! :)

Lymph Girl: Has anyone ever made you feel embarrassed? If yes, how so?

Emmie: No not really! I have accepted the fact that I have lymphedema and if people stare I stare back at their face!

Lymph Girl: How have you learned to cope with looking different?

Emmie: yes! My father once told me that having an ugly leg and being able to tell people a story is much better than having a perfect leg and not being able to say anything about it! Since then I am fine with my looks.

Lymph Girl: Does anyone else in your family have lymphedema? Or any friends?

Emmie: No, I have only once met someone with lymphedema... 

Lymph Girl: Has lymphedema stopped you from accomplishing anything?

Emmie: I would have loved to continue my ballet classes but because of the swelling and my op I can't do that any more. 

Lymph Girl: Have you accomplished something that was thought to be impossible because of having lymphedema?

Emmie: yes! I made my netball team at school! 

Lymph Girl: Do you wear shorts, short skirts, or short dresses? If yes, how do you feel when you go into public? If no, why?

Emmie: I love wearing short dresses! And our school uniform is a skirt! I don't mind if people stare... I'm just being me!

Lymph Girl: Do you have a hard time buying clothes/shoes that fit?

Emmie: I hate shoe shopping! We rarely find shoes that fit me because I am a size 11 UK so my feet are massive and having lymphedema doesn't really help. I can't wear certain types of pants so buying pants is also a pian!

Lymph Girl: Do you have any advice for other people living with lymphedema who may be struggling with coping?

Emmie: Hold on! Stay positive! Be yourself! Don't do anything stupid that will make you feel bad or swell up. Tell people about your struggles and don't worry if people stare because people are just people and they are going to stare and make a scene but you know what, you don't have to worry! Life's too short to wear ugly clothes to hide compression garments! Normally, if I wear my stocking, I tell everyone that my tan beats the hell out of theirs! You are gonna be just fine, what ever happens! Keep your head held high and always wear your smiles, scars and lymphedema like the most expensive jewelry! ♥ 

Emmie, I want to thank you very much for filling out the Q&A. Not only did you have to struggle through the possibility of having cancer (thank God it was benign) but now you are struggling with lymphedema because of that. Stay strong and continue to be positive. 

Thank you all for reading. Lymph Girl Stories is open to anyone who has lymphedema. Don't be shy, share your story today! Just go to the Questionnaire section of this blog, fill out the questions, and submit. Let's help each other understand that we are not alone.