Living with an “invisible” disease: share your pulmonary hypertension story to raise awareness and help others on the same journey

Disabilities are often not obvious to the eye, as the infographic of the cover photo eloquently illustrates (source: LinkedIn post by Pam Cusick, Senior Vice President at Rare Patient Voice). This the case with many rare and chronic disease patients, including pulmonary hypertension. Behaviours of people with invisible illnesses may be hard for others to truly understand. Have you ever felt that people, even close you you, don’t understand or even believe that you have a serious condition? Has anyone questioned your right to dedicated parking spaces or other disability benefits? Share your story online on the PH-KSP to help others on the same journey and to raise awareness; describe your feelings, your challenges, and how you manage this problem. Use the “Share Knowledge” form or contact us

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