Please excuse my blog hiatus. I was preoccupied with attending the National Hemophilia Foundation’s (NHF’s) Annual Meeting in New Orleans, November 11–13, so I fell a bit behind with my writing. There is so much I want to write about, but it’s difficult to condense the entire experience into a single post! As a matter of fact, it may take a few posts for me to write everything I want to about our experience at this year’s Annual Meeting because, yes, I was that inspired!
We were quite fortunate that last year's meeting (the first year we attended) was on our very own stomping grounds in San Francisco, so we knew where to find cheap parking and good eats. Although I was very excited about going to NOLA, venturing into a different city made me a bit nervous, too. I don’t travel often—my last trip on an airplane was in 2005—so flying makes me nervous. John thinks my fear of flying is silly, considering that I went skydiving earlier this year, but I can’t help it. I've never flown with a toddler or in my third trimester of pregnancy, either, so that only added to my apprehension. And need I mention the potential airport security fiascos associated with all the “medical contraband” Niki and I had to bring on our trip? To say I was nervous about our trek to this year’s Annual Meeting is an understatement!
The good news is that passing through airport security was surprisingly easy, even though I had an entire carry-on bag designated as a “mobile hematology and asthma/allergy care unit.” Even though I technically flew against medical advice from my ob-gyn—I’ll save that story for another post—flying while pregnant wasn’t so bad, either. And as for Niki? Well, let's just say her “adorable little girl” card got revoked a few times on the flights there and back. She wailed like a banshee when altitude changes made her ears pop, but hey, at least she didn’t get any nosebleeds! (I try and count my blessings where I can.)
Traveling to New Orleans
John and I aren’t rich, so this trip wouldn’t have been possible without financial support from Niki’s drug company. The company that manufactures the only medication we can use to manage Niki’s factor VII deficiency has a wonderful medical expense reimbursement program. (I’m so grateful that my HemoMommy friend shared this information with me last year!) The bleeding disorders community is scattered about here in the Bay Area, so our family tends to feel a bit isolated in our neck of the woods. Our local chapter has periodic get-togethers, but we can’t always make it. So, I mainly keep in touch with our extended bleeding disorders family via social networking sites and e-mail. Attending NHF’s Annual Meeting is one of the few times we don’t feel so alone.
We flew in a day early so we could settle in and adjust to the two-hour time difference. (Two hours may not seem like a big deal, but it is when you’ve got a toddler who is on a very strict nap schedule.) For obvious reasons, I didn’t experience the urge to go sightseeing last year. This year’s meeting was a tad more challenging because we had to balance work and play. I’m a planner by nature, which meant that having a trip itinerary in the Big Easy was an absolute must. There is a lot to see and do in the City of New Orleans, but NHF’s Annual Meeting provided a lot of sessions I wanted to see, too!
Prior to our trip, I scoured the session descriptions in the conference registration booklet. I was particularly interested in any and all sessions related to women with bleeding disorders (WWBD). We’re raising a WWBD, so John and I put priority on attending those sessions.
Women’s Bleeding Disorders Going Undiagnosed
My own mother experienced easy bruising and heavy menstruation that she thought was normal. It wasn’t until after my son Ethan was diagnosed that we discovered I’m a carrier of the FVII deficiency gene. We later discovered that I was a carrier because my mother had undiagnosed moderate/mild factor VII deficiency. Even after a lab test confirmed this a few years ago, she has yet to receive the direction she deserves, because her primary care doctor doesn’t understand the condition.
My mom has already gone through menopause, but I still think it’s very important that she at least be linked up with a hematologist who could make her more aware of potential risks associated with her FVII deficiency. She had a stent put in earlier this year, and when I alerted the surgeon about her FVII status, he didn’t seem too concerned. (Why do women with bleeding disorders seem to get swept under the rug by health professionals?) I’m not a WWBD, but I feel confident that our girl bleeders will finally get the representation they deserve with NHF’s new Victory for Women initiative. I felt a sense of empowerment the more I learned about the campaign.
The Annual Meeting’s reception for women with bleeding disorders was wonderful. We met in a room filled with strong women, delicious food and decadent sweets. What’s not to like, right? I made a lot of new friends last year, and this year was no different. John and I thoroughly enjoyed catching up with our extended factor family, other “lucky sevens” like Niki. It’s always amazing to watch Niki instantly reconnect with people she met when she was just 9 months old. Oh, but the highlights don’t stop there! After weeks of looking at pictures on the Internet, I finally got to see the Dana Maxx dress up close and personal. It is gorgeous!
And, I’m a little embarrassed to admit this, but I even felt a little giddy when I discovered that acclaimed photographer Patrick McMullan took a picture of Niki and John. The McMullan family’s story hits close to home on so many levels that I cried when I read “Iron Butterfly,” the HemAware Winter cover article about Connie McMullan and her daughter, Doreen, who died in 1979 from complications of a gastrointestinal bleed as a result of von Willebrand disease. Niki was the youngest WWBD in that room, and that made me feel quite proud.
I can’t wait to see what the future has in store for my daughter and all the women this campaign will reach. In the meantime, I’ve already started to teach Niki how to make a “V” for victory.
Read more about Tiffany's life at The Art of Lion Taming.