STRIVE HEALTH MENTORING Sickle cell Teens Raising awareness, Initiating change, Voicing opinions and Empowering themselves! Volunteer Recruitment Information Sessions April 17, 2012 April 18, 2012

STRIVE: W HO ARE WE ? Undergraduate CSRSO Group of 10 enthusiastic, caring, dedicated, and committed mentors 2 Program Coordinators We are all leaders and team players Premeds and non- premeds!

STRIVE: W HAT DO WE DO ? Provide support through mentoring one-on-one and in a group setting at La Rabida Children’s Hospital Educate teens with SCD on how to take care of themselves Help transition into healthy adults who can manage SCD Teach mentees to become self-advocates Help teens take charge of their health and lives with SCD

W HAT IS SICKLE CELL DISEASE ? Genetic disease where red blood cells form a crescent “sickle” shape Caused by an abnormal form of hemoglobin, hemoglobin S Persons with the disease have Hb SS, inherited from both parents. The sickled cells deliver less oxygen to the body and can clog small blood vessels.

W HAT HAPPENS DURING A PAIN CRISIS ? Pain episodes (crises) occur when sickle cells cluster in vessels and block blood and oxygen flow to tissues. Pain can last from a few hours to a few days. Hydroxyurea and Folic Acid are used to reduce the number of crises. Blood transfusions can also be necessary to treat a crises or prevent stroke.

W HAT ARE SOCIAL IMPLICATIONS OF SICKLE CELL DISEASE ? The variant severity of the illness can cause confusion in medical facilities. Racial and socio-economic stigmas have lead many to incorrectly assume immunity. It can manifest as a chronic illness requiring lifelong health care and medication.

WHY IS STRIVE NECESSARY? Adolescents with sickle cell disease experience obstacles to normal peer relationships: Chronic, disabling, and recurrent pain Lack of understanding, disbelief Frequent school absences Inability to participate in many extracurricular activities

WHERE DO WE COME IN? Support for adolescent sickle cell patients to discuss issues unique to their disease: -Frequent medical visits/hospitalizations -Missed interactions with peers/school absences -Perceptions as a “sick(ly)” classmate -Fears about progression of disease with age -Concerns about responsibilities of chronic disease

COMPONENTS OF STRIVE Peer Support: Patients establish a rapport with empathic and successful students of higher learning Closer in age to peer group Non-healthcare encounter Voluntary FUN activities! Mentorship: Inspires goals/aspirations Allows for patterning of behavior after a realistic role model Assists with healthier coping responses to chronic disease

A TYPICAL SESSION Arrival and Snack – catch up and chat over some delicious food prepared by one of our fantastic mentors! Highs and Lows – our little way of talking about the good and bad parts of the last week Tutoring and One-on- One Time Weekly Lesson Plan – discussing topics like Bio, psychosocial issues, self- advocacy Shout-Outs – we say goodbye with a weekly ritual

SOME STRIVE LESSONS Transition from childhood to adulthood in sickle cell disease Changes in hospital and clinic care Established health care providers discharge from pediatric care More responsibility needed on the part of the teen patient Discovery of bias that exists towards adults with chronic pain on significant narcotics, etc.

MENTOR RESPONSIBILITIES Components for success Comfortable and fun setting Nonjudgmental, empathic guidance Focus on activity and not disability Weekly commitments 2 hour session + transportation time Weekly phone call to mentee Weekly 1 hour mentor meeting Year-long commitment Quarterly field trips Advocacy project!

THANK YOU FOR COMING! WE LOOK FORWARD TO READING YOUR APPLICATION! Feel free to us if you have any questions: Also, you can visit our website: strivementors.wordpress.com