Lovisa's Story
The morning of every surgery I had growing up, I would walk down a chilly breezeway, windowed on both sides, that connected the parking lot to the hospital. I would push through the heavy revolving door, and right in the entryway, in gray marble with tan and silver specs, was a quote by poet Edwin Markham. It rings more and more true as time goes on.
“There is a destiny that makes us brothers; None goes his way alone. All that we send into the lives of others comes back into our own.” For those of us affected by vascular malformations, by disease, by medical trauma, we all have a shared path that binds us closer together with each step we take toward our life’s purpose.
This came to me as I connected with Lovisa through our shared AVM community online and became more curious about her journey. As you read her story, in her own words, remember that although we may never meet face to face, hail from varied backgrounds, and have a range of opinions and views, we are all here - in this time of health innovation, connectivity, and progress – together. As we push forward and grasp the hands of those walking beside us, we pour into into each others lives the very things we need to survive – faith, hope, fortitude and love. What we provide to others by being vulnerable enough to share our stories and brave enough to thrive despite the odds, we also receive in return. The greatest of these is right in her name - Love-isa.
Hometown: Falun, Sweden
When I was younger, I wanted to be: A mermaid!
In 10 years, I will have: A job that I am happy with and way too many pets
My life long goal is to be: 100% comfortable in my own skin
If I could change one thing about the world, I would: Give women everywhere exactly the same rights and possibilities as men
My favorite quote/scripture/affirmation statement is: 'My illness has shaped me, but it does not define me.'
1) Describe the type of AVM you have? What was the first sign?
High flow AVM in my left cheek and lower lip. My mother first noticed discoloration around my mouth when I was about nine years old, and soon after, my lip started swelling. I finally met a doctor who gave me my diagnosis when I was 11 years old.
2) How did you eventually come to receive treatment?
First my doctors here in Falun was convinced that I had an inflamed salivary gland in my lower lip, and they were planning to cut my lip open and drain it. Luckily my parents weren't so sure about letting someone just cut blindly in to their daughters face and demanded that I got to meet a specialist in another town and that saved my life. I later met a surgeon in Uppsala, Sweden, and he quickly discovered what was wrong, and that I actually could have bled to death if my parents didn't prevent them from cutting open my lip.
3) Who are/were your main doctors? Where are/were you treated and how has your care been?
I've had the same doctor, Dr. Pär Gerwins at Uppsala University Hospital in Uppsala, Sweden, since I was 16.
4) How do you feel your health will progress in the future?
My AVM has been very aggressive the last few years, and even though I've been treated with several embolizations since 2013, there's really not much of an improvement right now. But my doctor is actually meeting with Dr Waner in October to discuss surgery to remove parts of the AVM, so hopefully I'll see some big changes soon. My dream is to be totally pain free one day.
5) How has having an AVM changed or impacted your life?
Oh my god! In every way possible. I've been bullied and harassed because of me looking different. I've been struggling with depression and anxiety, and it's been really hard at times. Being a teenager with a malformed face, severe bleeding and extreme pain was not ideal to say the least. But through this I've realized that beauty really IS in the eye of the beholder, and nowadays I only surround myself with people who see past my AVM and love me for who I am.
6) What has been your biggest challenge in the battle with AVM?
Trying to accept the fact that I don't look "normal" and maybe never will.
7) What do you think a documentary about those surviving AVM can achieve?
Being able to inform people about this unknown illness is extremely important, and I think that a documentary is the perfect form of media for that. I would love for more people to get to know that AVM exist.
8) What are your hopes for the future of AVM research?
In an ideal future, there will be a cure one day and of course that is what I hope for.
9) What has been the biggest lesson you've learned throughout your journey thus far?
That I'm not my illness. I have AVM, but it's not who I am. I am a singer, a video game addict, someone's girlfriend, a feminist, a pet owner, who just happens to also have an AVM. And that's important to remember.
10) What is your proudest accomplishment?
Surviving. When I was the most depressed, I was convinced that I wouldn't survive past my 18th birthday. But one day, I realized that I could either let the AVM consume not just my face, but also my whole life, or I could stop battling my illness and try to learn to live with it instead. And last week I turned 26. Every day is overtime right now, and even though some days still are super hard to get through, I appreciate every moment.
When I was younger, I wanted to be: A mermaid!
In 10 years, I will have: A job that I am happy with and way too many pets
My life long goal is to be: 100% comfortable in my own skin
If I could change one thing about the world, I would: Give women everywhere exactly the same rights and possibilities as men
My favorite quote/scripture/affirmation statement is: 'My illness has shaped me, but it does not define me.'
1) Describe the type of AVM you have? What was the first sign?
High flow AVM in my left cheek and lower lip. My mother first noticed discoloration around my mouth when I was about nine years old, and soon after, my lip started swelling. I finally met a doctor who gave me my diagnosis when I was 11 years old.
2) How did you eventually come to receive treatment?
First my doctors here in Falun was convinced that I had an inflamed salivary gland in my lower lip, and they were planning to cut my lip open and drain it. Luckily my parents weren't so sure about letting someone just cut blindly in to their daughters face and demanded that I got to meet a specialist in another town and that saved my life. I later met a surgeon in Uppsala, Sweden, and he quickly discovered what was wrong, and that I actually could have bled to death if my parents didn't prevent them from cutting open my lip.
3) Who are/were your main doctors? Where are/were you treated and how has your care been?
I've had the same doctor, Dr. Pär Gerwins at Uppsala University Hospital in Uppsala, Sweden, since I was 16.
4) How do you feel your health will progress in the future?
My AVM has been very aggressive the last few years, and even though I've been treated with several embolizations since 2013, there's really not much of an improvement right now. But my doctor is actually meeting with Dr Waner in October to discuss surgery to remove parts of the AVM, so hopefully I'll see some big changes soon. My dream is to be totally pain free one day.
5) How has having an AVM changed or impacted your life?
Oh my god! In every way possible. I've been bullied and harassed because of me looking different. I've been struggling with depression and anxiety, and it's been really hard at times. Being a teenager with a malformed face, severe bleeding and extreme pain was not ideal to say the least. But through this I've realized that beauty really IS in the eye of the beholder, and nowadays I only surround myself with people who see past my AVM and love me for who I am.
6) What has been your biggest challenge in the battle with AVM?
Trying to accept the fact that I don't look "normal" and maybe never will.
7) What do you think a documentary about those surviving AVM can achieve?
Being able to inform people about this unknown illness is extremely important, and I think that a documentary is the perfect form of media for that. I would love for more people to get to know that AVM exist.
8) What are your hopes for the future of AVM research?
In an ideal future, there will be a cure one day and of course that is what I hope for.
9) What has been the biggest lesson you've learned throughout your journey thus far?
That I'm not my illness. I have AVM, but it's not who I am. I am a singer, a video game addict, someone's girlfriend, a feminist, a pet owner, who just happens to also have an AVM. And that's important to remember.
10) What is your proudest accomplishment?
Surviving. When I was the most depressed, I was convinced that I wouldn't survive past my 18th birthday. But one day, I realized that I could either let the AVM consume not just my face, but also my whole life, or I could stop battling my illness and try to learn to live with it instead. And last week I turned 26. Every day is overtime right now, and even though some days still are super hard to get through, I appreciate every moment.
