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For Patients

Patient Stories

As the saying goes, "CARING is SHARING". Below are just a few of the amazing stories from SWS patients and families. Read the wonderful HOPE and impact we all can have on making PROGRESS! Then, share your journey story with us using the form below.

Ready to share your journey with us?


Here are some tips for telling your authentic journey story with others:

Be Relevant. Your journey story of SWS, KT, PWB is what you have, not who you are. Many people may admire Michael J. Fox for his efforts to end Parkinson’s in his lifetime. But, it’s more than his drive to end this disease, it’s the human connection he makes with his audience. 

Your journey story is not just about what form of SWS you have been diagnosed with, it’s about your unique story of overcoming obstacles and moving forward. It is about the effect your story has on those experiencing the same diagnosis, symptoms, challenges, and the highs and lows. You can’t have the highs without the lows.

Be Authentic. Your journey story should be real, honest, and authentic – don’t be afraid to get deep in the trenches. Let your emotions be a guide to your story. Good, bad, and ugly, because we all have been there. Don’t downplay your experiences. Don’t let the inner voice of judgment allow you to silence your emotional story.

Don’t be afraid to use humor to tell your journey story. Chances are there are some good belly laugh stories along your journey. Share this. Laughter is the best medicine, after all.

Everyone loves a good comeback story. Encourage others by being real from the first diagnosis to where you (or your child) is right now. Celebrate the fact you’ve come a long way, baby!

Here is a few extra writing prompts to get your creative juices flowing:

1. Start or end with something unique about yourself. It could be funny quirks, your hobbies, your unique talent—anything goes.

2. When you were first diagnosed, what did that mean to you? How did it make you feel?

3. Start by describing your diagnosis and/or symptoms. Talk about your surgeries, how many, when was your first?

4. Talk about how your diagnosis has changed the way you live. What are some of your biggest challenges?

5. What is the biggest piece of advice you have for parents to help their children with this diagnosis? Or, what is the best advice you would give someone with this diagnosis?

7. What is the funniest thing someone has ever said to you? 


Let's do this!

Please limit your story to 250-300 words. Submit 1-4 photos that help tell your story.

I agree, by submitting my journey story to The Sturge-Weber Foundation, SWF reserves the right to edit my story for clarity and grammar. SWF may use my story and photos on social media, posted on the website, and in the Branching Out newsletter, along with my name.

Check box to agree to terms above.

Upload your journey story (formats accepted: .doc or .docx)

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