An Interview with Kristin Crossland
Interviewed by Julie Raskin
The United States is hyper-focused on New Hampshire today due to tomorrow’s presidential primary. Congenital Hyperinsulinism International is also very interested in the state of New Hampshire because of our friendship with Kristin Crossland, who is running for another kind of position in New Hampshire. Kristin is currently a contestant for Miss New Hampshire. She is an amazing young woman who has chosen to be an advocate for people suffering from rare diseases. She has a special connection to congenital hyperinsulinism which you will learn about in this article. I had the pleasure of interviewing her earlier today and I would like to share her unique perspective with you.
It is wonderful that a healthy young person with such a bright future is interested in health care access for all, better treatments for people who have rare diseases, and raising awareness about the rare disease, congenital hyperinsulinism. Why have you chosen to focus on these issues?
“I have chosen to focus on these issues for several reasons. I recognize how lucky I am to be healthy and I have opportunities that so many people do not. That being said, I could never forget those whom I know struggle every day due to lack of health care and medical conditions that are continually growing more complicated and need individual attention.
Congenital Hyperinsulinism holds a special place for me, and is actually my platform for Miss New Hampshire, because my little sister, Chelsea, battled HI her entire life. She passed away on August 2nd, 2011 at the age of 18 from a hyperinsulinism-induced seizure in her sleep. The thing that bothers me the most about losing my sister to a rare disease is that her life did not have to be cut so short. I have found that too many people are unwilling to learn or understand rare diseases.
I wish I had a cure for every time a school, insurance company, or government organization claimed that my sister did not suffer from a serious medical condition. She was refused an IEP (individualized educational program), had to fight to get a one-on-one school aid, and was informed that her dyslexia and medical condition did not affect her ability to learn or her adult life.
They were right about the second part, because she never made it to her adult life. I was usually the person dialing 911 when my sister had a seizure, and even then, I was put through a great deal of grief and even yelled at by the operators because they could not seem to grasp the severity of the situation, while every second my sister lost could mean permanent brain damage or death. ”
I know you are a recent graduate of Trinity College in Hartford Connecticut and that you are very busy with activities associated with the Miss New Hampshire pageant. What are your future professional plans? Will there be a connection to your Miss New Hampshire platform?
“I have wanted to be a lawyer since I was eight years old. I have always believed, and still believe, that someone needs to stand up for those without a voice in today’s society. Just because someone argues against you does not mean you are wrong, and I am the type of person who never gives up. I want to make a difference not just on a state level, but world-wide. It is so important for people like my sister to know that they are not forgotten and that someone is willing to fight for their futures.”
When you and I connected several months ago, you spoke glowingly of your sister, Chelsea. Can you share something special about her with our readers?
“My sister never wanted to be known as anything but herself: a loving, accepting, beautiful girl whose generosity and selflessness touched everyone who met her. When I raise awareness for HI, or when I promote finding better and more affordable treatments, I do so not because I want other people to feel obligated to help or to place people like Chelsea in a category of people who need a handout, but so these children and teenagers can have the chance to live their lives to the fullest and like any healthy individual. My sister wanted to live her life without regrets, and the world needs more people like her, regardless of whether or not they have a rare disease. She never wanted to be treated differently; she just wanted a fair shot at life.”
What advice would you give to the siblings of patients with congenital hyperinsulinism?
“I would say that when your parents tell you to be nice to your siblings and share with them, listen. You never know when the last day you have with them will be. Cherish not just your loved ones with HI, but every person whom you care about in your life, because you honestly never know when you might lose them. You should live every day like it is your last, and if you do, there is no way you can be disappointed in yourself.”
What kind of support do you think families need when a family member suffers from a rare disease?
“I think families dealing with rare diseases need all of the support they can get, because more likely than not, there isn’t a specialist close by with whom they can talk, or a support group that specializes in what they are dealing with. A lot of these families, and the members of their families with rare diseases, feel alone and isolated. They need support from professionals and other families so that they do not lose hope.”
Do you feel strongly that poor personal finances should not stand in the way of excellent treatment?
“I feel that every life is precious, and to deny someone treatment simply because they are rare is another form of discrimination, if not the worst kind. In the case of life and death, what a person needs most should be made more affordable and accessible, not turned into the most expensive thing in the world. No one chooses to have a rare disease or to be treated as different. I know Chelsea wanted nothing more than to be normal.”
