Publication Date: January 1, 2008
Parents of children with albinism now have access to a one-of-a-kind book to help guide them through the unique challenges of raising a child with albinism. Unveiled at NOAH s 12th National
Conference in Las Vegas, Raising a Child with Albinism: A Guide to the Early Years is a 200-page volume containing contributions from close 20 different writers. It provides a singularly authoritative source for new parents of children with albinism.
Edited by NOAH member Susan DuBois, mother of two children with albinism, this informative and inspiring book is illustrated with color photos contributed by Positive Exposure s Rick Guidotti and eight others.Topics include:
– What is albinism?
– How will albinism impact my child s development?
– How do I stimulate my child s vision?
– The social impact of albinism
– Sun safety
– Early intervention and IEP programs
And MUCH more!
Funding for the four-year project comes from Northern Illinois NOAH and a grant from Delta Gamma sorority.
About the Author
The National Organization for Albinism and Hypopigmentation (NOAH) was founded in 1982 to offer information and support to individuals with albinism, their families and the many professionals who work with them. NOAH s mission is to promote public acceptance and understanding of albinism and related conditions, and to encourage research that will lead to improved diagnosis and management of albinism.
Albinism refers to a group of rare inherited disorders that are present from birth. Albinism affects the amount of pigment found in the skin, hair, and eyes. People with albinism usually have little to no pigment in their eyes, skin, and hair, but the degree of pigment loss can be quite variable. There are four types of Albinism:
- Oculocutaneous albinism
- Type 1—complete absence of pigment. Skin, hair, and eyes lack all pigment from birth. Freckles or moles will not appear at any time during their lifetimes. This group is divided into several subtypes depending on associated characteristics.
- Type 2—decreased pigment, but may still have freckles and moles. This form of albinism is more common among persons of African descent. This form may be associated with such minimal pigment loss that it is evident only by comparison with other non-affected family members.
- Both Type 1 and Type 2 albinism are usually associated with visual problems includingnystagmus (abnormal jumping movements of the eyes) and decreased visual acuity, which is frequently not fully improved with glasses or contact lenses.
- Type 3—reddish brown skin, reddish hair and hazel or brown eyes, generally black South Africans.
- Type 4––similar to type 2, predominantly in Japanese persons.
- X-Linked albinism––vision problems without changes in skin or hair.
- Hermansky-Pudlak––in addition to albinism, persons also have lung, bowel, and bleeding problems.
- Chediak-Higashi––in addition to albinism, persons also have immune problems with defects in white blood cells.
Albinism occurs as a result of altered genes. In most cases these genes are inherited from parents. It may be autosomal recessive or X-linked.
Autosomal recessive inheritance accounts for the vast majority of cases. This means that both parents carry one copy of an abnormal gene but do not have symptoms or signs of albinism. Children become affected only if they inherit one affected gene from each parent. In this form of inheritance, each child has a one-in-four chance of inheriting the condition. The abnormal gene reduces (or completely eliminates) the body’s ability to make a pigment called melanin. There are several dozen different genetic subtypes of albinism. Individuals can have full or partial absence of this pigment which will affect the color of eyes, hair, and skin.
The chance of inheriting an X-linked altered gene will vary by the sex of the baby. Females have two X chromosomes while males have one X and one Y. If only one parent is affected the daughter will have one affected X chromosome and one normal X chromosome. The daughter will be a carrier but not have signs or symptoms herself. The son however only has on X chromosome. If the X chromosone that the son inherits is affected than the child will have albinism.
The AB Community has many heroes and because we practice inclusion not separation from the greats with our accomplishments, The Albinism Alliance Group salutes individuals making a difference by following their dreams. I ran across an extraordinary individual while surfing twitter through “Albinism News” and was proud to meet a doctor of medicine with her own practice in the state of Florida. With her expressed permission I am profiling Dr.Clarke of Clarke Chiropractic and Rehabilitation for The Albinism Alliance Group.
Dr. Shereffa Clarke was born in Montego Bay, Jamaica. She migrated to Broward County Florida with her family at the age of seven. At a very young age Dr. Clarke knew she wanted to serve her community through healthcare.
While attending Plantation High, Dr. Clarke was a part of Health Occupations Students of America (HOSA) an organization that fostered young people desires to enter into healthcare occupations. She was involved with numerous other activities while in high school, graduating in the top twenty-five percent of her high school graduating class. Dr. Clarke graduated from the University of South Florida with a Bachelors of Science in Biomedical Science, with the Honors College designation. Dr. Clarke graduated from Palmer College of Chiropractic Florida where she earned the Doctor of Chiropractic degree.
Along with serving her community through chiropractic, Dr. Clarke does community service in the form of road clean up, American Heart Walk, Relay for Life, Breast Cancer Walk and much more. She is a proud Member of The Faith Center Church in Sunrise, Florida. Dr. Clarke also serves her community through education; she is an adjunct professor at Broward College in the Biology department teaching Anatomy and Physiology.
In her free time Dr. Clarke likes to play musical instruments such as the clarinet and piano which she has played since elementary school and going to Karaoke. She enjoys spending time with her parents, siblings, and close friends. The following are credits to Dr.Clarke
Palmer Clinic Abroad – Bequia, Saint Vincent and the Grenadines
Awards and Recognitions
- Dean’s List Palmer College of Chiropractic Florida
- Phi Sigma Theta Honors Fraternity
- University of South Florida Honor College
- National Society of Collegiate Scholars
- Golden Key International Honor Society
- Who’s Who Among College Students
- American Black Chiropractic Association -Secretary
- Florida Chiropractic Association
- Eternal Legendary Queens Inc.
This book takes a close look at the life of a black male living with albinism. It gives the reader insight as to what life can be like for a black male or female with albinism growing up within the black community and the impact public humiliation, intimidation, and ridicule can have on an individual long-term. In addition this book can serve as a guide to both parents and young adults who may know someone or may themselves may be dealing with the hardship(s) of living with albinism. I not only discuss my own experiences but also those of others who have had a great influence in my life.
About the Author
Lee G. Edwards was born December 27, 1961 in Tuskegee, Alabama. He is the son of Mr. Marvin A. Metcalf and Mrs. Margaret H. Metcalf. As one of five children which include three sisters and one brother he is the only one with albinism. Lee is a 1992 graduate of the University of Alabama at Birmingham with a Bachelor of Science degree in Human Resource Management. Mr. Edwards has been faced with the difficulty of living with albinism in the black community. In meeting the challenge he co-founded the Dayton Area Persons with Albinism in 1987. He also became a member of the National Organization for Albinism and Hypopigmentation (N.O.A. H) in 1987. Lee has had the opportunity to discuss the subject of albinism on radio talk shows in Ohio and Alabama. In June of 2000 Lee has founded the Atlanta Area Persons with Albinism with mid to long-term goal of hosting the N.O.A. H. conference. He has dedicated his life to making a positive difference in the lives of others who may be finding it difficult living with albinism.
Too White to be Black and too Black to be White:
Living with Albinism
Publication date: 5/28/2001
Working with Dr. Aaron L. Tookes Ed.d to come and speak with members in Atlanta at a venue for The Albinism Alliance Group. Dr. Tookes is an administrator in the Atlanta Public School System and was my mentor in high school. At the time, Dr. Tookes was working as a vision resource teacher and was instrumental in the positive development of all his students.
He went on to earn his Masters in Education and Ph.D in education administration from Troy State University, while teaching us. His experiences have granted him the wisdom to share. I have asked him to share with us. Will keep you posted on the day and time. Venue is Center for the Visually Impaired on West Peachtree Street.
Organizational Meeting in Fairburn
Building a Powerful Impact w/Grassroots Albinism Special Interest Groups!
The Albinism Alliance Group or TAAG is an advocacy network organized to “Celebrate the Beauty of Albinism!” To accomplish this we serve as an informational resource to the community. We’re creating a series of information pertinent to understanding living with albinism and related characteristics. TAAG envisions a larger mulch-cultural resource by joining forces with other special interest grassroots organizations.
The Albinism Alliance Group was formed in March of 2003. and created from merging “The Atlanta Area Support Group” and online social network “Blonde Black Cuties”. Since then, membership has grown tremendously and we currently have 397 members around the world.
We have furthered endeavors with social networking, online activities, and meet and greets. Additional activities and events have blossomed into meaningful memories by giving people from all walks of life, an opportunity to share experiences of living with albinism. An informal atmosphere and camaraderie has contributed to irreplaceable fellowship. Join us at the next event. See you there! Follow additional updates for The Albinism Alliance Group on Facebook Causes
1. Celebrating the Beauty of Albinism
2. Developing Strong Core to Keep and Bring Persons w/ Albinism Together
3. Empower the Next Generation w/Education and the Ability to Limit Low-Vision Disadvantages.
4. Create and Connect with Visual Stimulating Communication Channels which feature persons with Albinism
5. Delivering a Cause that supports inclusion for All persons with Albinism.