Next month, it will be three years since Kathi was diagnosed with Intracranial Hypertension. Over the past three years, we've been on a roller coaster of sorts, with ups and downs, twists and turns, long drops, and definitely a few loop-de-loops. After the initial shock of the diagnosis, we -- like all families -- immersed ourselves in research. We read everything we could get our hands on, searched the Internet for any little tidbit of information, and talked to as many people as we could to try to learn whatever we could learn about what exactly this journey would be like and if there might be an end in sight.
What we found out was that there's only ONE research facility in the entire world that studies Intracranial Hypertension. ONE. Thank God for the Intracranial Hypertension Research Foundation (IHRF) and all that they do for IH families! We learned that IH is a RARE disease -- 1 in 100,000 people worldwide are diagnosed with it. We learned (the hard way) that because IH is one of those "invisible" diseases -- people who have it don't often look sick and every test/scan comes back "normal" -- it's difficult to get help when you need it; people tend not to believe you when you explain your symptoms; medical professionals often misdiagnose you and prescribe incorrect/ineffective treatment protocols (migraine meds, anyone???), leading to months and sometimes years of suffering before an accurate diagnosis is even made.
Kathi was blessed to have had a doctor in her Urgent Care facility that knew something about headaches. We credit him, by the grace of God, for Kathi's fairly quick diagnosis. If not for this doctor, we might still be floundering in the sea of medical mystery. Instead, this doctor suggested she might have IH and then confirmed it when Kathi had her first spinal tap/lumbar puncture (LP) in November 2009. While we were elated to finally have a diagnosis after months of screenings and ER visits and pain, we were quickly brought back down to reality by the fact that so little is known about this disease. We had doctors after that first one tell us that the diagnosis was wrong -- that Kathi can't have IH because she doesn't fit the stereotypical profile -- and other doctors tell us that the initial diagnosis is absolutely correct. Thanks be to God Kathi now has a medical team that believes her and is working with her to relieve the pain and symptoms as best they can. There's no cure for IH. There's no treatment specifically for IH. There are meds that we use that are meant for other diseases and there are procedures to help the symptoms, but nothing to treat the root of the problem. Yet.
Feeling alone in our IH cocoon, we looked and looked and finally found a few Facebook groups related to IH and joined those, grateful to find a community of people going through the same struggles that we are going through. In addition to these IH-specific groups, we found rare disease networks on Facebook -- the Global Genes Project to name one very influential network. We signed up a year or two ago for the Global Genes "7,000 Bracelets for Hope" campaign and received beautiful bracelets in the mail, made by people who want to support those in the rare disease community. We felt so loved! From there, we decided we wanted to give that feeling of support to others. but we weren't sure exactly how. We started slowly, looking for groups to work with, eventually taking an active role in the leadership of a couple of the Facebook IH groups -- we were excited to finally be able to be PROactive in this fight rather than just having to REact to what was happening to Kathi.
This past Friday, Kathi and I attended the Rare Disease Patient Advocacy Summit hosted by Global Genes. We met others who are raising awareness for rare diseases as well as professionals in the pharmaceutical industry and representatives of financial institutions who fund advocacy and research worldwide. We learned from leaders of grassroots Patient Advocacy Groups about how they started foundations not only to raise awareness for their rare diseases but to fund gene research to find a cause for these diseases, to connect with pharmaceutical companies to find/create drugs to treat these diseases, and more. Most of all, we learned that we can make a difference; we can do something to help sufferers of IH; we don't have to stand back and let IH run our lives.
So Kathi and I talked about everything we learned, what we've been through together over the past three years, how she wants to help her fellow IH'ers, and what she feels called to do. We hit upon starting The IHope Foundation. Kathi has definite goals for this foundation, plans for how she wants to proceed, and what kind of help she wants to offer the IH and rare disease communities. I'm excited to be on this next leg of her journey with her. I'm proud that she is taking charge of her disease and fighting for others beyond herself. And I think, somehow, three years is the perfect milestone for her to begin. So here we go. We invite you to come along for the ride and work with us. In the coming days and weeks leading up to Kathi's 3rd "D-Day" (Diagnosis Day) anniversary, we'll be unpacking our mission for you here and getting everything in order so that we can unveil the new foundation. Our goal is to have a grand unveiling in November. That's a tall order, but we're determined. We hope you'll join us.
~ Pia
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