Aplastic anemia fighter

I am a fourth year medical student being treated for aplastic anemia. In 2021 I was diagnosed with bone marrow failure after bone marrow biopsy,… Continue reading Aplastic anemia fighter

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My Story – behind the makeup

I had encephalitis, meningitis adenovirus all before I was 2 years old. Growing up I dealt with asthma and multiple pneumonias. I was on birth… Continue reading My Story – behind the makeup

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HSP Nephritis

Hi I’m Dasha, When I was 2 years old I was hospitalized with Kawasaki disease, a rare vascular condition, that was not treated on time… Continue reading HSP Nephritis

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Personal story by Katie from Canada

Katie is a patient and one of our Patient Advocates for Canada. She is a true example how you could deal with your disease. Watch… Continue reading Personal story by Katie from Canada

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My newborn

Hello my name is Ray, me and my girlfriend just welcomed our baby girl on October 23 2022. She was born premature and Everything was… Continue reading My newborn

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Lijep pozdrav. Moje ime je Senaida, a moj sin se zove Dželal, koji boluje od rijetkog oboljenja, cistične fibroze. Živimo u Srebreniku mali gradić u… Continue reading Nevidljiva

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I have Huntington disease

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My son was born about two week early. They at first thought he had downs. I said no he doesn’t look it. They assumed because… Continue reading Kbg

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CASK-related disorders : (January 2023)

Notre fille, Enora, est née avec 3 semaines d’avance suite à un déclenchement en raison d’une inflexion de croissance pendant les dernières semaines de grossesse.… Continue reading CASK-related disorders : (January 2023)

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