Inhibitors

Those Very Special Inhibitor Families

Laurie Kelley March 3, 2008

Inhibitor families are a special lot and my admiration for them just continues to grow. For the past six months I’ve been interviewing parents and patients for my new book on inhibitors and I have learned what amazing hardships they face, and with such courage. Though I helped facilitate the Novo Nordisk Consumer Council for the past two years, I still didn’t have a full appreciation of their lives. This past week in New York City we inaugurated a new group of parents and patients for the Consumer Council, and I feel better able to represent their needs by knowing more about the medical care, parenting concerns and social issues they face.

We had a wonderful time on Friday. Meeting at the Westin Hotel Times Square for a full day, the marketing team at Novo Nordisk and I presented questions and listened to nine consumers share their experiences, thoughts, suggestions and concerns. None of them had ever met one another, as inhibitor patients are pretty rare and in a country as big as the US, it is hard for them to meet. The Novo Nordisk Inhibitor Summits brought inhibitor patients together for the first time two years ago, and yes–for all who are reading this–there are going to be two more this year.

We had breakout groups, exercises and ice breakers. One ice breaker–meant to help us get to know one another–asked each participant to identify themselves with an animal. Everyone chose different animals, from a kangaroo to a dog to a lion. But Schlander chose an ant–unusual because almost no one in these types of exercises ever chooses an insect. Why an ant? Because though small, they are strong in groups and can accomplish something that seems impossible, given their size. Given that this group will be together for two years, it was a perfect animal to choose to highlight what a small team of dedicated people might and will accomplish.

Great Book I Just Read: Blood: An Epic History of Blood and Commerce, by Douglas Starr. Four stars! This book took me a while but it was well worth it. Fantastic overview of the history of blood. It starts with the story of a madman running naked through the streets of Paris… reads like a novel but is packed with information about the meaning of blood in society, medicine and business. Learn about its incredible importance during World War II, and how much we advanced our knowledge of blood because of the war. Fully half of the book is devoted to the hemophilia holocaust, and I read with sadness and pride about our community, and its fight to bring safer measures of blood treatment and justice to the victims. It was startling and impressive to read about the leadership and courage of people like Bruce Evatt of the CDC, and Corey Dubin and Dana Kuhn of COTT, true heroes in our midst even today. I had read the history of the HIV infection before, and even watched the HBO movie about it, and still see Corey and Dana at events. But.. time goes on, and being human, we all tend to forget the past. This book reminded me of how privileged we are to have these warriors; how lucky my son and anyone born after 1985 are because they benefited from their perseverance to get a settlement from the government and drug companies, and have safer measures. And they still persevere in protecting our blood supply even today. Blood is required reading for anyone involved in the hemophilia community on any level.

The Power of Alternative Medicine

Laurie Kelley February 18, 2008

On Saturday I drove down to Rhode Island to visit my friend Rich Pezzillo. Rich is a 24-year-old with hemophilia and inhibitors. One of the toughest cases I have ever seen. He’s had quite a year this past one. I wrote about him in my blog December 2006, when I visited him in the hospital. He was in excruciating pain then. It was very hard to be with him for three hours, because he was in constant, deep pain, apparently from his sciatic nerve. He is only a bit older than my son, so it was hard as a mother to see someone so sweet hurting and not be able to help. And Rich really is sweet, a great guy.

And so is his dad, Richard. I spent four hours interviewing Rich Jr. for my book on inhibitors and came away for a whole new appreciation of parents. Richard is a mechanic and small business owner, and father of three wonderful sons. Two have hemophilia, Anthony and Rich. But only Rich has inhibitors. What they’ve been through could fill a book. But I marveled at the father, and how devoted he is to his sons. Rich told me of the time when he was hospitalized in Vermont while at college, and his dad drove up from Rhode Island every other day to visit him. That’s a long ride, and a huge commitment when you own a business.

And when the doctors in Rhode Island informed Richard that his son would never walk, he refused to accept it. He was told the inhibitor bleeds had done too much damage to Rich’s nerves. Rich would always be wheelchair-bound. Through sheer desperation, Richard found a way, oddly enough, through karate. Anthony, despite having hemophilia, is a karate master. When he injured his shoulder, he was told by his fellow karate teammates to try a renowned acupuncturist in Haverhill, Massachusetts, about 15 minutes from where I live. When the visit cured Anthony’s injured shoulder, Richard convinced Rich, who put up a fight, to see him. They have gone weekly over the past year.

Now, I’ve seen Rich many times, at NHF meetings and at advisory board meetings we are both on: he is always in pain, and almost always in a wheelchair. On Saturday I had a shock. When I saw him, he was standing completely erect, relaxed, with no wheelchair in sight! I first thought “He’s so tall! When did he grow?” I never saw him at his full height! I was delighted. We chatted for four hours, with no interruptions of pain, as in the past. Richard is convinced it was the acupuncturist, who told him that all the wheelchair time had compressed a nerve. The nerve, overstimulated, didn’t know how to stop sending pain signals. With treatment, the nerve stopped, and Rich is much better.

It’s an amazing testament to the power of alternative medicines. I think I am going to check out this guy for my right shoulder. Too much scratch-pad movements while writing this book. And look for Rich at more hemophilia events. If he had high attendance while in dire pain, you can imagine how much he’ll get around now! Indeed, he said aloud how he couldn’t wait to go to Istanbul for the WFH meeting in May, after which we heard a shriek from his mother in the kitchen. Apparently he hadn’t told her!

There Will Be Blood

Laurie Kelley January 28, 2008

When I decided to write a book about inhibitors (which I am currently doing), I thought how cool it would be to actually visit with a family and see what their regular life is like. It’s hard to write about something when you don’t see it in action or live it. Now, I wouldn’t say that the Fatulas are a typical family with inhibitors: four boys, and three have hemophilia and inhibitors! And lucky me, I was able to visit with them in Western Pennsylvania this past weekend.

Some of you may know Kerry Fatula. She’s the executive director of the Western Penn Chapter (her aunt, Louise, is executive director of the Alaska chapter). She and I served on the Novo Nordisk Consumer Council for the past two years, where we became fast friends. Okay, we became friends after I made her watch a really terrible movie after one council meeting, and we either would be friends for life or never speak to one another again. So friends it was. Turns out we have lots more surprising things in common. Inhibitors, however, is not one of them.

I hung out with Kerry and her husband Chuck at NHF in November, and proposed the idea of a visit. They were so accommodating and welcomed me like family. I arrived Friday evening, Kerry picked me up at the airport, and we promptly went and ordered what seemed like 16 chili dogs at a drive through for the family. It was great seeing everyone again. Paul, 18, headed out that evening to a sleepover so we didn’t get to chat much. Nathan, age 16, is a delightful conversationalist and budding guitarist. Stephen, 5, slept through the whole evening on the couch even though we were pretty loud. And Colin, age 8, just stole my heart (he’s the hemophilia-lite one).

On Saturday I must have interviewed Kerry for 5 straight hours. We covered everything you would want to know about inhibitors: how each boy was diagnosed with inhibitors; early problems; ITT; products used; relationship with the medical community; searching for info; having more children. Kerry is superwoman: all these children, trying to infuse each one daily for their ITT and get them to school. She painted a hysterical picture of herself sitting on each boy, every morning, poking them with a needle to get their factor, like an assembly line! Kerry confirmed what I am learning: each family with inhibitors is almost completely different from every other one. It’s hard to draw generalities. What I learned most is what amazing parents Kerry and Chuck are. Four lovely, healthy young men who are just regular boys and who will be wonderful men some day.

Back at their house Saturday afternoon, Nate let me interview him for a while. He missed so much public school due to bleeds, that he uses Cyber School now. Of the three boys with hemophilia, only Nate has not been tolerized. Kind of like saying he’s never been domesticated! His blood runs wild. He has a great attitude, and wants to make a career of music.

After the interviews, the youngest boys, Stephen and Colin, decorated me and Kerry with tattoos: a butterfly for Kerry; a psychedelic heart for me, right on my hand for all to see. Stephen chose a mushroom for his hand, and Colin chose a guitar for the back of his neck. Then Kerry and I stole away to see “There Will Be Blood,” the new movie that is getting rave reviews and Oscar nods for Best Picture. It also stars Daniel Day-Lewis. Kerry and I learned we were both huge DDL fans. Appropriate for two hemo moms to see a movie with such a title. And when you have inhibitors, there will be blood. It’s a whole different ball game than just having hemophilia. The movie was great, and my weekend even better. What a wonderful treat to spend a weekend with such a great family. We parted with many good byes and the nicest hug from little Stephen.

Great Book I Just Read: The Kokopelli Theory, by Kevin Correa. This medical thriller is a first-time novel by a local Georgetown resident. The author actually stopped by to give me a copy, but it’s the topic that had me read it: a medical student slowly uncovers a shocking theory about the spread of hepatitis C. From a stolen serum in California in the 1970s, to the Serengeti plains, to the highest reaches of the World Health Organization, the story keeps you guessing and doubting. Good read for a first time author! I think this would make for a great movie, too; it has all the right components for a great summer flick.

Largest Ever Inhibitor Meeting

Laurie Kelley October 8, 2007

The Novo Nordisk Dallas Inhibitor Education Summit was the largest ever gathering of inhibitor patients in the world–very impressive! Over 75 families attended. In the US, there are only about 1200 people with inhibitors. Trying to get this small group together for weekend is not easy, but they came from Wisconsin, Massachusetts, Florida, California and Pennsylvania, as well as many other states. It was great to see both old friends and make some new friends.

On Friday, I facilitated the Novo Nordisk Consumer Council Meeting, which brought together for the last time a team I have worked with for two years. Our role is to offer feedback to the marketing team at Novo Nordisk about product enhancement, educational materials, and needs in the inhibitor community. We also reviewed the first winner of the Uninhibited Achievement Award, Mike McNamara, whom we had all selected at a previous webcast conference. Gar Park of Novo Nordisk reviewed our achievements of the past two years, and they were amazing! I think of all the consumer advisory groups I’ve worked with or facilitated this has been the most productive.

There were lots of tears shed when parting came (right, Theresa?), and we are now accepting applications for the next two years. If you know anyone with inhibitors or is a caregiver of a person with inhibitors who might be eligible and available, please let us know! We will need about 10 new council members.

The rest of the weekend was a series of excellent lectures and panel discussions on topics ranging from factor IX and inhibitors (an incredibly rare combo) to pain meds to advocacy. Excellent speakers, audience participation and flawless event planning by Cadent Medical made for a memorable weekend.

Next year the Summits will be held, but maybe with some changes in venue and direction. Be sure to check with both the NHF and HFA to learn where and when they will be held. If you have inhibitors, you will not want to miss these! All travel expenses have been paid by Novo Nordisk so it will cost you nothing to attend, and you have everything to gain!

(Photos: top down, Panel discussion; Consumer Council at Work; Mario and his mom, from San Antonio; Laurie with Deena and son Tyler; Jessica and Kerry; Laurie and Kerry with Cowboy Jim!)

Inhibitor Summit in San Diego

Laurie Kelley July 23, 2007

I am in California all this week and just spent the weekend in San Diego at another great Inhibitor Summit, this one with a record number of attendees from across the US. The energy at these events is tremendous, and the parents and patients are actively involved in all sessions. I was glad to see many people returning from last year, which made this very much like a reunion of friends.

Friday began with a wonderful review of inhibitors by Susan Karp, RN (University of California, San Francisco), who is well known and respected in our community. In the evening after dinner, a fun yet insightful icebreaker by Heather Huszti, PhD, a psychologist who works with families with hemophilia, who had quite a few fans in the audience. The activity taught us a lot about teamwork.

The Main Event on Saturday was chaired by Dr. Guy Young, now based in Los Angeles, who also gave us an overview of treatment strategies. And an incredibly inspirational talk was given by 23-year-old Rich Pezzillo of Rhode Island, whom I am honored to call my friend, about his experiences with inhibitors from age 18 to age 23. Rich has suffered tremendously and faced many hardships in the last five years, but it has only strengthened his resolve to live life to the fullest and deepened his faith. His speech really set a positive and uplifting tone for the day.

There were sessions on venous access, diet, surgery, parenting, transition and ITT. The day ended with a great educational talk by Nathan Wilkes of Utah, who has a son with an inhibitor, on what he has learned about advocacy.

See photos of the event here.

Well, the day didn’t actually end there. It ended with an amazingly fun celebration, under a covered tent, with a traveling petting zoo for the kids–complete with monkey, chinchilla and tortoise. And for the grown ups? Karaoke and dancing! Wow, do I have some incriminating photos of some of our community members! Only half kidding, just some memorable shots of dear friends having a great time. I do recall: Matt Compton and Gar Park singing “I Wanna be Sedated”; Chris and Leland Smith rapping “Walk This Way” a la Run DMC/Aerosmith with Ezra Robison; Shuantaye belting out some amazing Beyonce; Eva cutting some amazing dance moves; Eva, Shantaye, Doreen and the ladies looking like “Dreamgirls”; and everyone (me included) doing the electric slide! It was a wonderful time and we all thank Novo Nordisk for sponsoring this fabulous event that not only educated us, but brought us together to make happy memories and new friends.

I have the greatest admiration for families with inhibitors and what they endure, and am impressed with their exceptional medical knowledge. Congratulations to them all for their perseverance, fortitude and achievements!

Next Summit? In Dallas, October 6. Check out www.inhibitorsummits.org to see if you qualify to attend. I hope to see you there!