Sickle Cell Disease Getting the Support it Needs.

Published by: Chicago Defender
Written by: Shera Strange

Sickle Cell Disease or Sickle Cell Anemia is not talked about as much as it was in the 60s, 70s, and 80s, however, the disease was discovered in America in 1910, over 110 years ago.  Sickle Cell Anemia is an inherited red blood cell disorder where there are not enough healthy red blood cells to carry oxygen throughout the body. The round red cells usually are flexible and can quickly move through the blood vessels. Sickle Cell Disease (SCD) can affect individuals of any ethnicity or race but is more common in African Americans in the U.S. compared to other ethnicities-occurring in approximately 1 in 364 African Americans.

In early Sickle Cell Disease awareness campaigns, The Black Panther Party took up the fight for health and opened free health clinics across the country. In addition, the Black Panther Party recognized that Sickle Cell Anemia was a neglected genetic disease because most of those affected were Black. The party set up a national screening program by running a rapid sickle cell screening program on a simple finger stick.

Access to high-quality health care is a significant challenge in the Sickle Cell Disease community, exacerbated by the impact of COVID-19 and longstanding healthcare disparities.

A local organization received a grant to support those in Chicago’s underserved communities with Sickle Cell Disease. The Sick Cells organization was named a distinguished grantee of the Global Blood Therapeutics (GBT) 2021 Access to Excellent Care for Sickle Cell Patients (ACCEL) Grant Program. Global Blood Therapeutics is a biotech company dedicated to discovering, developing, and delivering life-changing treatments for people living with dire blood disorders, such as Sickle Cell Disease. Established in 2019, the ACCEL Grant Program supports community-based organizations and institutions in accelerating the development of sustainable access-to-care programs. In 2020, the grants focused on the transition of care from pediatrics to adult purpose care. As a result, individuals with Sickle Cell Disease did not have the opportunity to connect with a program in the adult setting the same way they have in the pediatrics setting. Click here to read the rest of the story

Developmental Disability Awareness Ribbons

Awareness ribbons in recent history began when Penney Laingen used the ribbon as a symbol of vigilance ( from the song, Tie a Ribbon Around the Ole Oak Tree) when she tied a yellow ribbon around the oak tree in her front yard when her husband, Bruce Laingen. a top-ranking U.S. diplomat was a hostage during the Iran hostage crisis in 1979. This was followed by the red ribbon during the AIDS epidemic and the pink ribbon bringing awareness to breast cancer.

Ribbons have long been used as a way to bring awareness and raise consciousness for a cause. Ribbons and disability awareness have evolved from bringing awareness to various disability topics such as sensitivity, inclusion and advocacy to including various formats. People are using social media as a means to promote awareness including using hashtags and setting up Facebook pages specifically for disability awareness.

Disability awareness and acceptance is being done through the use of awareness ribbons.

The Ribbons below focus on ribbons that bring awareness to developmental disability and special needs issues.  including individuals with neurodevelopmental and intellectual disabilities. Awareness is only a part of educating and training people on disability awareness. Training activities should also include acceptance and understanding.

Awareness Ribbons

Autism Spectrum Disorder- The Autism ribbon continues to evolve overtime. The puzzle piece was first used in 1963 by a parent and board member of the National Autistic Society in London indicating the puzzling, confusing nature of autism. In 1999, the puzzle piece ribbon was adopted as the universal sign of autism awareness by the Autism Society reflecting the complexity of the autism spectrum. Overtime, the both the puzzle and ribbon have become a symbol for seeing autism as something that is puzzling an needs to be fixed rather than acceptance. A more positive symbol includes the infinity loop used as a symbol for acceptance rather than awareness.

Angelman Syndrome- Blue

Apraxia- Light Blue

Attention Deficit Hyperactivity (ADHD)- Orange

Cerebral Palsy- Green

Cri Du Chat- Blue

Developmental Disabilities- Silver or light blue

Di George Syndrome- Teal

Down Syndrome- Blue and Yellow

Dravet Syndrome- Purple

Duchenne Muscular Dystrophy- Light Green

Epilepsy- Purple

Fetal Alcohol Syndrome Disorder- Silver and Blue

Fragile X Syndrome- Teal

Hydrocephalus- Light Blue

Prader Willi- Orange

Rare Disease- Zebra Stripe

Rett Syndrome- Purple

Sensory Processing Disorder- Blue or Orange

Sickle Cell Anemia- Burgundy

Spina Bifida- Yellow

Spinal Cord Injuries- Green

Tourette Syndrome- Teal

Trisomy 18- Light Blue

Turner Syndrome Purple Butterfly

Williams Syndrome- Burgundy

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Burgundy Awareness Ribbon

  • Sickle Cell Anemia
  • Williams Syndrome

 

Blue Awareness Ribbon

  • Angelman Syndrome
  • Cri Du Chat

Green Awareness Ribbon

  • Cerebral Palsy
  • Spinal Cord Injuries

Light Blue Awareness Ribbon

  • Apraxia
  • Developmental Disabilities
  • Hydrocephalus
  • Intellectual Disabilities
  • Trisomy 18

Orange Awareness Ribbon

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Prader Willi Syndrome
  • Sensory Processing Disorder

Teal Awareness Ribbon

  • Fragile X Syndrome
  • DiGeorge Syndrome
  • Tourettte Syndrome

 

 

 

Purple Awareness Ribbon

  • Dravet Syndrome
  • Epilepsy
  • Rett Syndrome
  • Turner Syndrome

Blue and Yellow Awareness Ribbon

  • Down Syndrome

Light Green Awareness Ribbon

  • Duchenne Muscular Dystrophy

 

Silver and Blue Awareness Ribbon

  • Fetal Alcohol Syndrome Disorder

Yellow Awareness Ribbon

  • Spina Bifida

Observance and Awareness Month

February

Turner Syndrome Awareness

March

Trisomy18

Kidney Awareness

Multiple Sclerosis

Cerebral Palsy

Developmental Disabilities

April

Autism

Auditory Processing Disorder

May

Apraxia

Cri Du Chat

Cystic Fibrosis

Williams Syndrome

June

Dravet Syndrome Day

July

Fragile X Syndrome

National Craniofacial Awareness and Prevention Month

September

Duchenne Muscular Dystrophy Day

Hydrocephalus

Sickle Cell Anemia

Spinal Cord Injuries

October

ADD/ADHD

Down Syndrome

Rett Syndrome

Sensory Processing Disorder

November

DiGeorge Syndrome

Epilepsy

 

Updated 1/2/2021