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The Weight of Rare Disease

Living with a rare disease comes with challenges that many people may not fully understand. Beyond the physical symptoms, there’s the emotional, mental, and social weight that comes with navigating life with a rare condition.

How does living with a rare disease impact your daily life? What are the heaviest burdens you carry—whether they’re physical, emotional, financial, or social? And how do you find ways to lighten the load?

  1. Stay positive

    1. I stick to a routeen

      1. Take it day by day. Try to stay calm. Believe God is with me in this.

        1. I have my faith in God and the support of my family and friends. I'm naturally a very funny person, and try my best to stay in a positive state of mind and reduce stress as much as possible. Sites like this one also help, thank you for this community

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