A Positive View
By Eileen Rubin
As the ARDS Foundation brings in the new year, we look forward as a diverse community of people who have been affected by ARDS. Our group consists of those who have, of course, survived this syndrome, and their loved ones who have watched as they endure ARDS. However, a huge portion of the ARDS community consists of those who have had to bury their loved ones and are left asking that question that none of us can answer, “Why?”
So as we enter this year, the ARDS Foundation would like to take as positive a view as possible, in dealing with an obviously frightening, stressful, and upsetting situation. In the aftermath of ARDS, many ask what is being done in terms of medical research and what they can do as individuals to fight this insidious syndrome.
Regarding research, the physicians I spoke to who are with the ARDS Network updated me. Many in our community had heard all of the news reports regarding the ARDS Network and their halted research studies; the ARDS Network, although not the only ARDS research, is one of the best bets currently in terms of comprehensive ARDS research since it combines given research studies at multiple locations throughout the United States and Canada. The good news is that after inquiring, I learned that most of the ARDS Network centers are currently enrolling patients in the previously suspended FACTT study and a few weeks ago, the ARDS Network completed enrollment in the trial of corticosteroids in the late phase of ARDS.
Regarding what people can do personally, there is more than you think! It is important not to get complacent, as so much more needs to be done, and we as a community are the ones who must fuel the fire towards change in 2004. As we have said many times, there are so many ways that one can give of yourself:
*Share your ARDS story or that of your loved one
*Support someone in crisis
*Educate others about ARDS
*Gather petition signatures
*Write a letter to your representatives in Washington
*Distribute ARDS brochures
Of course, another way many people give is obviously from the pocket book; as a not-for-profit, the ARDS Foundation operates on donations from others, but we realize that there are those who cannot afford to give. After ARDS, you may have lost your job or had to go on disability due to extended time off from your lengthy illness, and even if working, you may still need to recoup. Still, there are ways that individuals can help raise funds on a small scale, and while doing so, raise public awareness.
In 2004, the ARDS Foundation wants to facilitate such endeavors. The slogan on the main page of our website says: “To do nothing because we can’t do everything helps no one. ” Every dollar counts and anyone who wants to volunteer their time to raise funds and public awareness, be it alone, or with a small group, is noble and their efforts are welcome. On our website, we will devote a page to illustrate and highlight those who take on this challenge.
The statistics are striking: Approximately 150,000 Americans are diagnosed with ARDS each year and about half of them will die from this syndrome. To be sure, ARDS touches many in the ARDS community in a variety of ways. The choice is yours regarding how proactive to be in this battle against ARDS, be it loudly, or quietly. But if ARDS has touched you, your family or your friends, then do something in this fight.
Every person counts, every dollar counts, every voice counts.
