Voor wie wil lezen wat het profylactisch gebruik van Ruconest betekent voor een HAE patiënt: check dit verhaal van Loukisha op FB. Zij beschrijft haar ervaringen en dat is belangrijk voor mensen die info zoeken of willen overstappen naar Ruconest. Wat geweldig voor haar en indrukwekkend te zien hoe ze haar leven weer opbouwd (en hoeveel tijd dat kost!!).
Omdat er veel nieuwe beleggers bij zijn gekomen hier plaats ik het toch even. Lange post.
Well, my friends, we are at the beginning of the week. We have crazy temperature changes in California. I went from using my heater to needing the AC. Since using #Ruconest I’ve been without swelling attacks. At the start it was such a strange thing to not wake up swollen or on the verge of a swell. Now I have to keep myself and ‘Ohana in check. I’m stabilized, however, I’m not cured. Now comes the challenge of broadening my boundaries even though I’m not struggling as much with my disorder as I used to. There are times now that my family can just relax. It has been well over 8 years since I went anywhere by myself, like to meet a friend for lunch. Before I had my accident and before #HAE set in, I never let grass grow underneath my feet. Understanding how to make this adjustment will take us all a moment to embrace. However I’m not saying my injury is healed. For I still have times my special quirks in my leg like to make an appearance. Today’s victory was that I’m not still in my pajamas and I was able to make my own snacks today. Instead of everyday being an “I’m one moment away from a swell” day, I feel like I’m hours, or heck, dare I say a day away from a swell. I’ve always carried around a few dreams in my heart, and I’m fortunate to be working towards them. Since I got to go out and see an old college friend for lunch, it looks like now I can start adding more to my list. Don’t stop dreaming and believing. Protect those wishes, for you never know when one will come true. Always remember everyone has a story to tell, so don’t be afraid to tell yours.