Personal update: meet the maker

Wilma Westenberg is a crochet designer and shares free crochet patterns

Hi all,

Today I want to share something very personal I have never really talked about before. Not that it’s a secret or anything; I just didn’t really have a reason to share my story. In this blog post you can meet the maker behind wilmade.com! 

Born with a tumor

I was born with a malignant tumor in my face. For more than 22 years doctors did not know what it was exactly. They had never seen it before and said I was the only one in the world as far as they knew.

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I have had surgeries when I was younger but the tumor came back immediately. There is nothing they can do. I’ve had a rough childhood with the tumor growing faster as I got older, but against all odds the last 6 years the growth has been stable. The future remains a big question mark.

Getting diagnosed

Less than a year ago (2017) I did a second opinion. Against all my expectations this new team was able to give me a diagnosis: Facial Infiltrating Lipomatosis, an ultra rare condition with worldwide only a handful of people affected. But still, this meant I wasn’t alone anymore after 22 years!

I immediately started searching online for other people with this rare condition. So far I have found 20 people in the whole wide world. We stay connected through Facebook and share pictures and experiences. It’s amazing how many similarities we have and how much we look alike. I consider them as my new ‘extended family’. Coming years I want to travel around the world to meet many of my new extended family.

Join me on my journey

My life is changing so fast (in a positive way) and it’s all so exciting! All these life changing events also have an impact on my crochet journey, which I will update you on soon!

Love,
Wilma

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8 Comments

  • Reply
    Caramia
    10 April 2018 at 6:02 pm

    Hi Wilma, I know someone that I have known for, eeewwww more years than I thought and it just shocked me how long… : /
    Anyway, back to the important message. I know someone that has had a tumor on her face at her lower jawline. I would say it showed its self when she was around 19 or so. I believe it is the same thing but I believe it took her like 20+ years to even put a name to it. I think it is the same thing. She is a darling lady. I really never notice that she has this tumor. It is just not what people look for or notice when they are enjoying the company of a wonderful person,.
    I think it is great that you shared. I hope she has found you and that the two of you get to compare and become great friends. I have not talk to or seen this nice lady in like 20 years. Her name is Sandy. I am going to look in on you every once in a while and see if I can put Sandy in touch with you…that is …if you and Sandy have not already come in contact.
    I love your site and and your work is so nice. You are a darling little lady; do not ever be shy !
    I wish you the very best in all that you do and want to do.
    Caramia

    • Reply
      Wilma
      11 April 2018 at 3:47 pm

      Hi Caramia, thank you for your comment! Wow, I’m glad they finally have a name for it after all those years! Many people tell me the same, about noticing it. They say after 5 minutes they don’t notice it anymore 🙂

      I don’t know her, but I would love to get in touch! Does she have Instagram? She can also email me if she prefers. Or I can contact her if she gives her email. Thank you for connecting us! 😀

      X Wilma

  • Reply
    Destiny
    9 April 2018 at 1:10 am

    You’re beautiful! So glad you finally have a diagnoses and are able to connect with your new extended family! ❤️

    • Reply
      Wilma
      10 April 2018 at 3:04 pm

      Thank you so much Destiny <3

  • Reply
    Rhonda
    9 April 2018 at 12:22 am

    Wow sometimes the internet can be such a great thing! So glad your research has brought you a new found confidence and that you can help others, you are gorgeous and thank you for sharing this and free patterns!

    • Reply
      Wilma
      10 April 2018 at 3:04 pm

      Thank you dear Rhonda, really appreciate it <3

  • Reply
    Eva Rothenberg
    8 April 2018 at 6:54 pm

    Hi Wilma ~ thank you for your tutorials. I did the double brim hat. BTW you are beautiful!

    • Reply
      Wilma
      8 April 2018 at 6:55 pm

      Hi Eva, you’re very welcome! Thank you so much for your kind comment, really appreciate it <3

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