Thursday, November 1, 2012

SUCCEED—For Your Faie Child


Confessions of a Teenage Hermaphrodite by Lianne Simon is a unique story, an authentic portrayal of the issues faced by an intersex teen coming of age in the early 1970s. Today such a child might be treated by specialists at a place similar to the SUCCEED clinic at the OU Medical Center Children’s Hospital in Oklahoma City.

Amy B. Wisniewski, PhD. worked with Drs. Kropp, Reiner and Chernausek to establish the SUCCEED Clinic—a multi-disciplinary clinic for children and adults affected by disorders of sex development, or DSD. Her research interests include psychosexual development and genitourinary health outcomes in people affected by DSD and the impact of endocrine disrupting compounds on male reproductive development.

Lianne Simon: I’m speaking with Amy B. Wisniewski, PhD—the Director of Clinical Research at SUCCEED. She was also kind enough to write the foreword for Confessions. Would you tell us a bit about the clinic and how it operates? Why would a child be referred there?

Amy B. Wisniewski: The SUCCEED Clinic is a multi-disciplinary clinic for people of all ages who are affected by DSD. Included in the clinic are specialists in the fields of endocrinology, urology and psychiatry. In addition to providing medical care for children and adults with DSD, the SUCCEED Clinic conducts research on health outcomes related to treatments for DSD, and also provides education to the community about DSD. To learn more about the SUCCEED Clinic please visit our website at www.succeedclinic.org

Lianne: You’re Associate Professor and Director of Clinical Research for the SUCCEED Clinic. What is your typical day like? What interaction do you have with these children?

Amy: My typical work day includes grant writing, teaching, study design and collecting data. I am very lucky to have the opportunity to interact with children and adults affected by DSD through my research studies that these individuals participate in as well as through my educational work with the community.

Lianne: I had a difficult time settling on a title for the novel. Hermaphrodite is politically incorrect, and offensive to some. I’m not fond of the label intersex. Disorder of Sex Development is okay as an umbrella term for a set of medical conditions, but it doesn’t say anything about who a person is. I like the word faie, a Middle English word for enchanted, but most people aren’t as familiar with it.

For some people, these conditions are life-altering—bringing into question even what sex a person is. What can you tell us about the extent of the effects of these conditions on a person’s life?

Amy: These conditions are very personal experiences that are unique to each affected individual. Some of the challenges and rewards of learning from people with DSD include an appreciation for the complex interactions of a person’s family and peers, as well as the resiliency of individuals who have overcome obstacles in their lives as a result of having DSD.

Lianne: Confessions of a Teenage Hermaphrodite isn’t memoir. For me, it was enough that the novel was based on the sorts of things that actually happen to intersex teens. And I was more interested in capturing something of what a teenager with a sexually ambiguous body feels.

Can you describe a typical child who is referred to SUCCEED?

Amy: There is no such thing as a typical child who is referred to the SUCCEED Clinic. For example, some people have a diagnosis associated with their DSD whereas others do not. Some people are female, some male, and others question their gender. Why the book felt authentic to me was the amount of soul-searching that the protagonist experienced when it came to discovering the gender she was most comfortable with. Many people with DSD have described similar histories to me. I am fortunate that these people have been willing to share such important and personal information about their lives with the SUCCEED team members.

Lianne: In Confessions the protagonist has lived in both genders, but pretends to be a boy to please her family. How do you tell what a child really wants and how much does that affect gender-of-rearing? How difficult is it to change once a gender has been chosen?

Amy: Understanding how gender develops is an important question for improving DSD medicine. Unfortunately we have much to learn in this area. Some of our studies are focused on better understanding how family expectations and/or hormone exposure influence gender. The likelihood of a person with DSD changing their gender depends on many factors, including but not limited to, the etiology of their condition, initial sex of rearing, and their parents’ expectations of gender. I am particularly interested on how society’s expectations of gender change over time, and how that fluidity impacts people with DSD.

Lianne: The novel doesn’t deal much with medical complications from a DSD. Mine gave me mild heart and kidney malformations. I’ve taken hormones forever. For most of my childhood, I was tiny enough to be the same size as my younger sister. Even the shape of my face was affected. I got to the point where I would blame a common cold on my condition. Is it usual for a patient to obsess like that?

Amy: I understand why a person would attribute all of their challenges in life to their DSD. I certainly see this happening with people affected by all types of medical conditions including myself at times. Gathering information to make the best medical decisions for yourself or your child is paramount to maintaining wellness and striving for happiness. My hope is that families and individuals affected by DSD have access to the most up-to-date information possible so that they may optimize their chance for good health and happiness with their lives.

Lianne: The protagonist has ambiguous genitals which are never surgically ‘normalized.’ How do you counsel a teen regarding their options and possible sexual relationships?

Amy: We are fortunate to have a Child Psychiatrist in our clinic, Dr. Reiner, who speaks with people about their sexual concerns. Also, we strongly believe that putting people in touch with others who have had similar questions or concerns about sexual function empowers people to overcome their concerns. My hope is that children who understand their DSD and are comfortable with this information will grow into adolescents and adults who have relationships with people who support them.

Lianne: One reason I wrote Confessions was to help raise awareness and, hopefully, encourage compassion toward people with a DSD. I know SUCCEED does more to further their welfare than just medical and psychological treatment.

Amy: I think that one of the best things the SUCCEED Clinic has done for those who choose to attend our functions is to build a community that celebrates the accomplishments and talents of the patients and families who are involved. Within this community are some of the most wonderful people I have ever had the pleasure of knowing. I am always impressed with the generosity and support our families show to newly diagnosed individuals.

Lianne: SUCCEED cooperates with the AIS-DSD Support group (www.aisdsd.org). That seems to be beneficial for both groups. Tell us a little about the importance of connecting with other people who have a similar DSD.

Amy: The SUCCEED Clinic is proud of our partnership with AIS-DSD to increase awareness among healthcare providers, families and affected individuals about issues related to DSD care. Support groups offer important interactions between people and families affected by DSD that healthcare professionals and researchers simply do not replicate.

Lianne: Thanks for sharing with us. And thank you so much for the work you’re doing.

For those who’d like to read more on Disorders of Sex Development, Amy has a book that she co-authored with Steven D. Chernausek, M.D., and Bradley P. Kropp, M.Do. It’s available on Amazon.

Lianne Simon is a Christian author, a housewife, and a member of the AIS-DSD Support Group. She and her husband live in the suburbs outside of Atlanta. She is grateful to MuseItUp Publishing for helping her support children with a Disorder of Sex Development. And she hopes that readers will enjoy her novel. 

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