Celebrate Yourself Everyday
The Albinism Alliance Group (TAAG) was formed out of a need for community in the Metropolitan Atlanta area, due to under representation by present organisations and leaders designated. We work together as a unit, using online communication, to keep one another encouraged and growing forward, by sharing experiences. We have been able to meet up and fellowship in informal settings and enjoy being ourselves without excluding ourselves from the masses or allowing ourselves to be exploited. The history of International Albinism Awareness Day, is important. We join with our brothers and sisters around the world to represent our community members, because each of us are someone to celebrate.
We are much more than the skin we are in
Human rights of persons with albinism is a real plight here in the US, but even more so in other countries. Discrimination for many basic resources is real and experienced often, no matter where we are. Self love, determination and the ability to preserver, can be key factors in learning how to make a mark in this world. We are much more than the skin we are in, but In support of International Albinism Awareness Day, we have to join together to stop discrimination and promote the betterment of persons affected with albinism everywhere.
Human rights of persons with albinism is a real plight here in the US
We are talented and capable, due to low vision and the differences in appearance we are not often afforded the opportunity to show this in desired areas, this can reduce the quality of a persons life. Low vision plays a big role in this and persons non-affected by albinism may find it difficult to understand the impact of low vision depending on his or her own experience. There is something to be said about all who work toward some sort of normalcy in supporting themselves, getting around and accomplishing extraordinary things with the verbal and non verbal prejudice that exists. Your reward is earned and this day shows that with a measure passed in the UK, we now have June 13th, to officially celebrate “Albinism”. This was made effective as of June of 2015. See the link above for more details about the history of this measure. Hats off to us all! Stay connected to us via social media and join us as we continue celebrating the beauty of albinism, for years to come.
South Carolina has a new face and good spirit to put up in lights. Recording artist Anya Dixon and CEO of All A Music Productions is ready for her next CD. She will be performing live at the Lower Richland High School Auditorium on Saturday November 2nd, 2013. Doors open at 4:00 pm and the show starts at 5:00 pm. She is recording her new CD entitled “Overcomer”. With such a touching title, Im sure it is something that many of us can relate to.
If you are in the area or plan to make arrangement to be in the area, stop by and check her out. I have her previous cd, New Life, purchased on Amazon.com http://www.amazon.com/New-Life/dp/B002TWCKAK/ref=sr_1_12?ie=UTF8&qid=1381183740&sr=8-12&keywords=Anya+Dixon It was very inspirational. My favorite song off this album is “New Life”. This song really spoke to me with the career transitions and finding my place in this world. We are all talented in our own way, but the AB community seems specially gifted in the arts. With so many creative talents in the community it is difficult to keep up with all of them.
Today, we salute Anya Dixon for following her dreams and using her talent in the music industry. She will do well and The Albinism Alliance Group is wishing her the best. To follow Anya or to reach her for booking go to http://www.aamusicproductions.com
Type 2 Albinism also includes OCA1B and OCA2
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.
A person with albinism will have one of the following symptoms:
- Absence of color in the hair, skin, or iris of the eye
- Lighter than normal skin and hair
- Patchy, missing skin color
Many forms of albinism are associated with the following symptoms:
- Crossed eyes (strabismus)
- Light sensitivity (photophobia)
- Rapid eye movements (nystagmus)
- Vision problems
Often many individuals have not learned that they have albinism until they reach adult hood, often because they don’t fit the typical appearance of what many know to be associated with the condition.
Growing many persons have brown skin, brown hair and with albinism often being associated with the appearance of white skin and blonde hair, person not fitting this description go through a lot dealing with low vision and not knowing the cause.
We have to be open minded and accepting of what it means to live with the condition and must take steps to get assistance for children through early intervention for potential issues with the vision and skin care. Not knowing can cause the child to be delayed and become out of touch with accomplishing expectations set for him or her. There are different types of albinism and genetic testing and a simple I eye exam can help get more specific results.
Take a look at some examples of Type 2 Albinism that you may not have noticed before. We all live with low vision and different skin care needs as a result of albinism, but with attention to the proper care our eyes will aid us in accomplishing some great things.
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.
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
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.