We recently asked stiff person syndrome advocate, Lea Jabre, to share her advice about life with a rare disease.
Trust your gut feeling
When you live with a rare disease before or even after diagnosis, it's important to trust your gut feelings and explore them—despite what others might tell you. Lea was finally diagnosed with stiff person syndrome because of her perseverance.
Make yourself heard
If you feel your doctor is reluctant to listen to your needs or respect your views, it could be time to consider changing your doctor. It's essential to foster a good relationship with your healthcare team so you feel comfortable going forward.
Know your body
Researching and asking plenty of questions can help understand your condition, and therefore your body, better. Also, when you know more you can give your opinion on your own healthcare plan.
Surround yourself with advocates
Make sure you have friends, family members and caregivers who know your condition well so they can advocate for you in emergencies and difficult situations. They're also important to have for support during tough days.
Share your experiences with others
Living with a rare disease can often feel isolating, so try to find people who share your condition. This could help you to understand your own situation.
Be the master of your own thoughts
Although it's hard at times, showing mental and physical determination can help you overcome the toughest challenges in life.
You can catch up with Lea's videos on our Instagram page. You can follow Lea on Instagram: @bent_not_broken_autoimmune.
Would you be interested in taking part in Advocacy Corner and sharing YOUR advice with our audience? Email hello@rareyouthrevolution.com and let us know.
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