Lymphie Stories

“I always end up still feeling good about my body”: How one woman with Parkes Weber Syndrome stays positive

Isa-Bella shares her story of positivity and hope in her own words.

A few weeks ago I received a friendly email from Isa-Bella Leclair, a young Canadian woman who had recently stumbled across the blog. We got to talking and, as she shared her story with me, I was moved: despite the severity of her swelling and her compounded health issues, she maintains an incredibly inspiring outlook and infectiously positive attitude on life.

Stories like Isa-Bella’s always have a deep effect on me because I have a tendency to let my lymphedema get me down sometimes, and the freedom in which Isa-Bella speaks and lives is something I have always wanted but didn’t think was wholly possible. After talking to her, though, I see that it is—and not just for me, but for all of us, any of us, who live with chronic health issues or diseases.

Looking at Isa-Bella’s photos, I don’t see someone who allows her medical condition to dictate her life. In fact, on first glance, the first thing I notice about her is not her leg but her glowing smile, and I see a person who is happy and full of love for herself. I’m sure she’s got her bad days, as we all do, but her personal commitment to living with confidence and using her lymphedema as a means of opening a meaningful dialogue seem to triumph. I love it, and am so grateful to her for sharing her story with all of us!

Here is Isa-Bella’s story, in her own words. I hope you’re as inspired by her beautiful take on living with a chronic medical condition as I am!

A doctor has never said to me that I have lymphedema—they’ve always told me that I have Parkes Weber Syndrome. In fact, lymphedema is a side effect of having PWS and, because it is a congenital disease, I was born and have lived with primary lymphedema for nineteen years. PWS is an extremely rare disease that consists of having multiple abnormal blood vessels in a member of your body (for me my right leg) which are also called arteriovenous malformations. This causes a huge red stain on my leg called a “port-wine stain,” and the lymphatic system damage creates swelling. The excess of blood also causes congenital heart failure. I’ve had several infections because the lymph has a tendency of leaking from my toes and, as you may know, bacteria love lymph. But my team of doctors and I have finally cleared lymphatic drainage massage as being okay for my heart: I am currently half-way through my treatments and already seeing results!

 

It’s always been difficult being active because of my heart problems (I am forbidden from doing any cardio), but I’ve found some alternatives that don’t push my limits (that’s the most important part—knowing your limits). When I was in 3rd grade, I discovered what is now my favorite sport: snowboarding! Eating healthy, drinking water and getting enough rest is always good also to keep feeling good.

 

Because I was born with the malformation, I had no other choice but to get used to people staring and asking me questions. I always told myself from a young age that curiosity is normal and the only thing that can help it is awareness, so I learned about what I had and told the other kids about it even before they had time to ask. My condition doesn’t define me and no way I will let it stop me from wearing a cute swimsuit or a cute dress. I don’t fit in skinny jeans or fancy shoes so I have to find alternatives, but I always end up still feeling good about my body. For me, confidence is the most important part, because when people see someone confident in their body—even with a handicap—they don’t have pity but instead admiration, and that’s when you have the chance to be a good influence and change the standards of beauty.
Isa-Bella Leclair, June 2015

58 comments on ““I always end up still feeling good about my body”: How one woman with Parkes Weber Syndrome stays positive

  1. mariette lobo

    what a wonderfully moving and inspirational story. well done Isa-bella.

  2. Wonderful and inspiring! Thank you Isabella! I am saving your meme to show my 12 year old son who was born with primary lymphedema in his left leg he has quite a similar attitude 😀

  3. We Canadians are a pretty pragmatic bunch! Thank you Isa-Bella for your story and such a refreshing, strong attitude. Your smile shines through your photos!

  4. Wow – you are a beautiful young lady and an inspiration. Thank you for sharing your story. I absolutely love your outlook on life!

  5. Hello Alexia
    I Would to Know if it is possible to find out what kind of exams Isa-Bella Did to find out that she has Parker Weber Syndrome. Her answer will be VERY import (Could you give her my email, please?? Do you thing that she cananswer me as soon as possible??
    THANKS
    my e-mail is l.de.linfa@gmail.com
    Manuela

    • Hi, Manuela,
      I will pass along your email to Isa-Bella so she can get in touch with you. Hope all is well!
      Alexa

      • Thanks Alexa, for your help (it is really important the answer of Isa-Bella)
        I’m wating :)
        Have a nice week
        Manuela

  6. Thanks, Alexa, Isa-Bella wrote me :)

  7. Lynda Chedore

    I have always been inspired by you Isa-Bella. Your zest for life and your contagious smile brightens the room. Thank you for sharing your beautiful story with others. You are an inspiration!

  8. Dominique Doucette

    WOW ! ♥

  9. Don Jones

    Hi Alexa,
    Isa-Bella appears to be a very determined young lady, one suspects that if she had not been hampered by her symptoms she would of accomplished many more things in her life and been an even greater inspiration!
    I have some information that may be beneficial for her regarding her condition and request that you pass on my email address: deepspaceone@yahoo.com
    Many thanks in advance,
    Don

  10. Dear Isa-Bella,

    It is so great to read this!! I have park weber myself and I have never met anyone else with the condition! I am 23 years old and from the Netherlands. I am so glad to read how positive you are! It is how I try to be as well. It really helps me to know there are others who experience the same thing! I loved reading the snowboard part, because for me skiing is now my favourite sport :D!! I was so glad to read this, thanks for being an inspiration and giving park webers some awareness! If you want to get in touch, please do :)!!

    Love,

    Sofie

    • Hi Sofie,

      I am an Assistant Producer for a TV company based in London and we are making a new documentary series about rare genetic conditions, if you are interested in hearing more about the show it would be great to talk to you. You can email me at helen.barker@raw.co.uk

      Thanks so much

      Helen

  11. victoria hv

    Hi, this story is amazing. I have Isa-bellas promblem as well and I would love to talk with her. Help me to contact her please

    • Joanne Leclair

      Hi Victoria. Sorry for just replying now but has anyone helped you reach Isa-Bella?

  12. I don’t have PWS, but I do have chronic lymphedema in my right leg only. Mine is secondary lymphedema – the result of ovarian cancer, hysterectomy, chemo. That happened when I was 38. I’m 44 now and still struggle with body image and wardrobe challenges because of the lymphedema. When I saw Isabella on Mighty Girls page I felt joy and relief. I often wonder what people see when they look at my – the leg, or me. I know now having seen Isabellas radiant smile and healthy attitude, it’s possible and easy to see beyond the leg. Isabella is my inspiriation. I’m so grateful she shared her story. If any of the responding doctors, could help me with my lymphedema, I would love any and all information. My email is azieli@yahoo.com. Thank you and bless you.

  13. Hi Isa-Bella Leclair, I’ve suffered with a very similar complaint for some 25 years since having skin cancer, and having my lymph glands removed. I would recommend one of the most efficient ways of keeping it under control is the use of compression tights, I see in some photos you are wearing one, but I would strongly recommend the use of it full time, not in bed but from the moment you get up until the moment you go to bed.

    The most difficult thing for me is getting trousers to fit!!!

    Regards, Keith Hughes

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  18. Carolyn Darlington

    You are such a smart and beautiful young woman. Keep shining your light and inspiring the world!

  19. Fernanda Glez

    This girl is so inspiring. People get depressed for little insignificant things, when this girl is living and enjoying her life no matter what, we have to learn from this people! Sorry for my bad english hehe I’m from Mexico :)

  20. I had to scroll down to read what condition she had that was affecting her as I didn’t even notice it in that top pic! All I saw was a confident and beautiful young girl – didn’t even notice her leg :)

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  22. I just saw your photo and had to tell you how amazing you are. I had a blood clot in my leg, which was left undiagnosed for months and as a result my leg randomly swells and I get horrific cramping. It has taken me a long time to have the body confidence you have. You look fantastic, and are an inspiration!

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  29. So great, I love her outlook and body positive thinking!

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  32. Jenee Stewart

    Wonderful story and wonderful outlook on life and PWS! I, too, have had lymphedema in my right leg since birth. While never formally diagnosed with Parkes-Weber, I have many of the exact characteristics (avm’s from hip to toe and the port wine birthmark covering 90% of my leg. Since moving to a new state and school in my early teens, I began covering up my leg because I was tired of the staring eyes and cruel comments. Despite my own challenges with self-acceptance,I found my love for music; performing throughout middle school and high school. I obtained a Bachelor of Music in Vocal Performance and continue to perform regularly on stage singing for small and large audiences as an avocation. I continue to dress more modestly, but am completely inspired by Isa-Bella’s confidence and attitude. I have gone to the beach a few times, and wore a swim suit despite feeling quite vulnerable about my appearance. I am in my early 40’s and work very hard to keep my limb as healthy as possible so that I can continue to live life to the fullest, stay healthy for my family, work…and of course sing whenever possible. 😀. I am open to meeting others with lymphedema (and Parks-Weber). Feel free to email me at jenees@gmail.com

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  35. Hell. I’m George Zigah from Ghana. i reading news on http://www.yahoo.com and i saw your picture. i know herbalist in Ghana who can help you for your problem. only if you would like to come to Ghana,…. your problem will be solve. All i want to tell u is that.. take a freight to Ghana anytime and i will help u.
    Thanks
    George Zigah

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  40. What an inspirational young girl. May you walk among the models and know you are more beautiful than they ever could be. You have a quality they could never have on top of your outside beauty, you carry dignity, intelligence, grace, and determination.
    I wish you success in your mathematics career and with all life offers you. You are a true example of what girls should be looking to grow towards.

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  43. my sister has same leg like her. i m trying to find medical solution for this. please email me Isa-Bella Leclair email ID. I would like to talk to her. Thank you lahiruhw@gmail.com

    • Joanne Leclair

      Hi..I am Isa-Bella’s mother. Has anyone helped you get in contact with Isa-Bella yet?

      • nate costa

        does your daughter still have parkes weber syndrome?

        • Joanne Lurette Leclair

          Yes…it is something she has had since birth and will always have

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  45. Just to say that the story is also in my blog (portuguese).
    http://l-de-linfa.blogspot.pt/2015/11/isa-bella-sente-se-bem-no-seu-corpo.html
    Thanks :)

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  47. Thank you, Nice share

  48. Khomotso Ramanaledi

    Dear Manuela please pass this email on to Isabella, I would like to thank her for being an angel in such dark times.

    Dear Isa-bella
    Embarrassingly I’m only coming across your inspiring story now in 2016, but it still hit me with great impact and intensity. Automatically I’m inspired to keep going at life with a positive attitude.
    I am such a fan, I keep telling my friends in South Africa about you and your amazing character.
    Your story does not mean the world to me but means an entire galaxy. Thank you

    • Joanne Lurette Leclair

      Isa…check out this nice response to your article…read right to the bottom. Unreal how you are still inspiring people right across the globe. You really should try to respond back to her…I am sure she would love that!

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