“I am disabled and the more people I meet the more I think every one has some kind of a disability”

My patient is a 16-year-old beautiful girl who has a problem in her joints. She recently tried to raise awareness about her disease among classmates by conducting a short presentation to her class. Then she was asked a few questions that put her down…

• "Is it a challenge for your mother to pick you up from school every day?"
• "Is it hard to be dependent on your parents?"
• "Why do you wear lipstick every day. Does it have something to do with your depression?"
• "Do you have any privacy like unhealthy food or TikTok videos?"
• "Who takes care of you if you go out with your friends or on a date?"
• One boy said that Googled the disease ahead of time and said that every person affected with this condition has cognitive disorders. "Do you understand that you’re crazy?" was his question…

So here is something that I’m asking my patients to ALWAYS remember:

1. You are not a burden. We all are not burdens. We are all individuals with goals, objectives and expectations. And this is what makes the world such an interesting place to live. The goal is to find people with whom you are comfortable, who understand you and don’t label you as sick, crazy, weird, or slow...
2. Interest is not equal to empathy and sometimes it is the opposite. An interest from society is important to raise awareness and keep constant engagement from society for our patients in need. But sometimes this interest hurts and even ruins privacy and personality borders.
3. Be ready to push back. In both cases of visible and invisible disabilities, people can show unnecessary curiosity. And so you need to know how to explain that you are not slow, you are ok for your disease status. For instance, a boy can look healthy, but is actually sick and cannot play football or tolerate typical physical examinations.
4. We are all disabled in certain ways. We need to learn how to live with our disabilities. Frida Kahlo was bedridden after accident, but continued to create. Stephen Hawking was one of the most famous scientist the world has ever seen. Nick Vujicic is a world-famous motivational speaker and is the founder of "Attitude is Altitude”. Andrea Bocelli was diagnosed with congenital glaucoma at the age of 5 months.
5. If you are different, it does not mean that you are not normal. For example, I like quantum physics. It is my hobby. Every time we have a new masterclass, I’m usually the only blondie there.
6. We all deserve the level of love that we expect. The question is when, where and with who.

P.S. Next week we are secretly sneaking away from the family (agreed preliminary with the doctor) to eat at McDonald's and then for a girls only shopping trip to buy some new lipstick.

About Me

I’m an executive leader and trusted advisor with 16 years of experience in lifecycle asset management for 170+ rare and orphan medicinal products and advanced therapies in 40 therapeutic classes with 368 orphan drug designations, resulting in approximately $2.4bn in capital committed to alliances with biotechnology and pharmaceutical partners of all sizes. Additionally I’m an active patient advocate for people with rare and orphan condition, representing a Patient Voice initiative in Charité, Berlin, Germany. Clinical pharmacology background with translational PhD on rare skin diseases. Member of 14 organizations, 1 board of directors. Accomplished artist with artwork published in upcoming book.