Meet Lea Jabre

We were lucky to catch up with Lea Jabre recently and have shared our conversation below.

Hi Lea, thanks for sitting with us today to chat about topics that are relevant to so many. One of those topics is communication skills, because we live in an age where our ability to communicate effectively can be like a superpower. Can you share how you developed your ability to communicate well?

I always knew I was good at writing, I started journaling at young age. I was later on published in current affairs magazines and more recently in rare disease publications.

I knew words were powerful and also a powerful tool of expression.

It is when a video made by a special person about my search for a diagnosis in October 2022 called “If you’re not dancing something is wrong” and that it went viral that I discovered I could also and knew how to use words to express myself vocally.

This led me to create in October 2022 Bent Not Broken Autoimmune – an Instagram Page where aside from many collaborations and a new shift, I have been making videos documenting my journey with my rare disease Stiff Person Syndrome.

Appreciate the insights and wisdom. Before we dig deeper and ask you about the skills that matter and more, maybe you can tell our readers about yourself?

I am Franco -Lebanese, graduate from the University College of London (UCL) with an MSc in International Public Policy, I have lived extensively in France, Spain, the United Kingdom, Lebanon and The Gambia. I currently live in Lebanon due to my health issues

I have various years of experience in both the NGO and journalism sectors. Currently working remotely as Fundraising & Communication Manager at Reddo Care, London and most recently founded Boukra Nour NGO in Lebanon.

Most importantly, life took me in a different direction. I am a very passionate and active Stiff Person Syndrome and Rare Diseases advocate! I created an Instagram page after my Stiff Person Syndrome Diagnosis in May 2021.
My search for a diagnosis was around 5 to 6 years long and once diagnosed I felt there were little resources so I created Bent Not Broken, a play on words, it was always my dream for it to be a patient resource page but it first took for me to document my journey and create a community for my dream to come true. Bent not Broken will still document my journey but will also involve as many SPS patients that want to participate.
We are stronger together! I truly believe that!

Follow my Instagram account:
Bent_not broken_autoimmune

Follow me and my SPS Bestie Dr. Ilea Khan:
YouTube channel: @stiffpersonsyndromeheart2heart

Other little facts: I love writing (now working on a manuscript I hope to publish), I love music, I love exploring my inner creativity coming out in different form recently – I used to love dancing and play the piano – both of which have become more difficult to do.

Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?

Being Curious about Life – both personal growth as well as current affairs and news

My health issues – learning how to live and everyday accepting a little more how to live with various diseases including Stiff Person Syndrome (1 in a million), Type 1 diabetes (since I am 12) and Rheumatoid Arthritis

Career & Success – having to be redefined by the course of live events

Alright, so before we go we want to ask you to take a moment to reflect and share what you think you would do if you somehow knew you only had a decade of life left?

Live in the present day and try to stay grounded in that day without thinking that my time had a definite end

Make the most of any opportunities offered to me

Keep writing and speaking out as an advocate

Contact Info:

Website: https://aspire.hopkinsmedicine.org/project/42518
Instagram: https://www.instagram.com/bent_not_broken_autoimmune/
Youtube: https://www.youtube.com/@stiffpersonsyndromeHeart2heart
Other: I hope to keep growing these platforms

Image Credits

Myself & my care giver

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Hi Lea, thanks for sitting with us today to chat about topics that are relevant to so many. One of those topics is communication skills, because we live in an age where our ability to communicate effectively can be like a superpower. Can you share how you developed your ability to communicate well?

Appreciate the insights and wisdom. Before we dig deeper and ask you about the skills that matter and more, maybe you can tell our readers about yourself?

Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?

Alright, so before we go we want to ask you to take a moment to reflect and share what you think you would do if you somehow knew you only had a decade of life left?

Image Credits