Deze ¨open¨ brief van Loukisha had eigenlijk in het begin van dit draadje ERVARINGEN MET RUCONEST moeten staan. (Als de IEX moderator dit kan aanpassen, graag, b.v.d.) Dan had men wellicht een beter inzicht gekregen welke beperkingen patienten met HAE hebben en hoe nu met RUCONEST hun kwaliteit van leven met de dag beter wordt.
Ik vind het persoonlijk heel fijn om te weten dat ik met mijn investeringen er kan toe bijdragen dat er duizenden mensen net zoals Loukisha geholpen kunnen worden.
Even als Brooke Magnussen wil Loukisha ´haar´ verhaal met de rest van de wereld delen. Heeft u familie, kennissen, buren of kent u via het WWW andere mensen die hun verhaal willen doen, nodig ik u hierbij uit deze hier te posten!
Brief van Loukisha Oktober 2016......
This letter is targeted towards helping people understand a little more what it is like to deal with this chronic and sometimes invisible condition. Hereditary Angioedema is hard for people to understand, because it is so rare. I will try to put to words what I feel and deal with in everyday life. Here you go:
Having Hereditary Angioedema means many things change, and a lot of them are invisible. Unlike having an obvious or visible condition, most people do not understand even a little about Hereditary Angioedema and its effects. It is a rare disorder, so that makes sense that most don’t know much about it. Even in hospitals doctors and nurses say all the time to me, “I’ve heard of it, but never met anyone with it.” Now, with my mobility issues things are visual, and people see me in my wheelchair and will get some understanding. But the invisible nature of my swelling disorder remains hidden, until it decides to pop up out of nowhere. Unfortunately I am reminded everyday of new ways my disorder does affect me and my family. These are the things that I would like you to understand about me.
I sometimes spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about things, my family, my friends, and most of the time I’d love to talk to you about what you are going through, or what you’d like to talk about, instead of just talking about my struggles. I feel that I try to look normal even though I don’t feel happy. I work hard at participating in family life, and not being a burden. So, if you’re talking to me and I sound happy, I sometimes feel miserable. Even though I’ve been sick for years, I do have moments I feel better than miserable. I try to really enjoy and embrace the days I do feel better than I usually do.
Things can be so different day to day. Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With what I deal with, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. I can be breathing one moment, then realize that my airway is being compromised the next. That is one of the hardest and most frustrating components of HAE. That’s what Hereditary Angioedema does to me. My family also has to adjust constantly with these variables.
If you want me to do something, then ask if I can. I love to be a help to my loved ones in any way I can. In a similar vein, I may need to cancel a previous commitment at the last minute. Those days are a huge bummer, though. If this happens, please do not take it personally. Please understand that Hereditary Angioedema is variable. Also, with my mobility issues, it’s quite possible (for many, it’s common) that one day I am able to walk with my cane in the grocery store, while the next day I’ll have trouble getting to the next room. Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Sometimes I end up suffering in private the next set of days.
Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. People who know me say they can read it on my face or in my body language, when I’m in pain. Also, Hereditary Angioedema can be fatal, it does not forgive, nor does it wait for anyone. Please understand that if I say I have to sit down, lie down, stay in bed, infuse my meds, it probably means I wish I didn’t have to.
I am grateful that there are some drug companies working on better and more effective treatments for us right now, but things may take a life-time to change. The research and testing is still in its baby stage, and only a few doctors are working on it.
Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general. If I seem touchy, it’s probably because of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able. In many ways I depend on you. I need you to visit me when I am too sick to go out. Sometimes I need your help. I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.