Hieronder een verhaaltje van Jill die tegenwoordig ook erg actief is op de social media (FB pagina HAEi). Zij gebruikt overigens geen Ruconest maar is net als Brooke Magnussen zeer objectief en wil (nieuwe) HAE patienten helpen de weg te vinden om in aanmerking te komen om de juiste medicijnen voorgeschreven te krijgen.
Uiteindelijk zal het medicijn wat de beste uitwerking heeft een groter aandeel verkrijgen en zal het verkoopteam van Pharming hier verder op moeten inspelen!
Hi, my name is Jill and I’m a 33-year-old California raised, self-proclaimed mega nerd. I was diagnosed with the Rare Disease Hereditary Angioedema Type 3 (or HAE for short) last year, though HAE has affected me for most of my life. HAE causes unpredictable attacks internally. During these attacks something triggers my blood vessels to become “leaky” and that leaked fluid turns into massive, painful, potentially lethal swelling *anywhere in the body*. Attacks can last days on end, for me happen bi weekly, are located in the airway, intestines, limbs, face, and more. Since this is a genetic blood disorder and not an allergy, it does not respond to normal medications like Epipens or Benadryl. Without vital HAE medications patients have had a mortality rate of as high as 1 in 3. Diagnosis and awareness are the keys to saving HAE lives! Having a Rare Disease has undoubtedly changed my life in more ways than one, but not all for the bad. When I first found out I have this rare, potentially life-threatening illness I decided that I only had one option: advocate. I chose to be the best Rare Disease HAE Warrior I can be. If I have to live with an incurable genetic disease, then I am going to be the loudest, proudest, and best advocate for HAE that I can be. Because of HAE 3 I have become a stronger person, I’ve made some amazing friends in the Chronic Illness/Rare Disease Community, I am a Board Member for a patient advocacy group Stronger than the Storm, and author a Rare Disease blog on Facebook and Twitter. For more info on all 3 types of HAE please check out HAEA.org.