NATIONAL TAR SYNDROME AWARENESS MONTH
In April, National TAR Syndrome Awareness Month focuses on improving the support of those with this rare congenital disorder.
TAR syndrome is described by two conditions: Thrombocytopenia and Absent Radius (TAR). On its own, anyone at any age can be diagnosed with thrombocytopenia, and it impacts a larger percentage of the population. However, thrombocytopenia with absent radius is rare, affecting 1 in 200,000 people. The radius bone is one of two bones in the forearm. The second bone, the ulna, may also be affected. TAR syndrome may cause short stature, impact the hand, upper arms, legs, and hip sockets, too. A noted difference between TAR syndrome and others impacting the radius is that those with TAR syndrome are born with thumbs, while with other syndromes, they are not.
Thrombocytopenia is a blood disorder where a low blood platelet count results in clotting issues. Symptoms include:
- Bruising easily
- Frequent nose bleeds
- Bleeding gums
- Minor cuts that clot slowly
- Internal bleeding
The internal bleeding caused by low platelet counts can also impact the brain and other internal organs. Thrombocytopenia is usually present at birth, and for the first few years of life, treating thrombocytopenia is the primary concern for someone with TAR syndrome. Low platelet counts can lead to organ damage and death. However, given enough time, their platelet levels improve as they grow, and their risk of internal injury decreases.
Awareness and Support
During childhood, many children see a pediatrician familiar with their condition. However, as they grow into adulthood, children with TAR syndrome transition to general medicine, family practice, or internal medicine doctors. Since TAR syndrome is so rare, their new doctor is often unfamiliar with the condition, and it can be difficult for the patient to feel their concerns are being addressed. That’s another reason why raising awareness is so important. The more the medical community is educated about TAR syndrome, the more support those living with it will receive.
While these issues may seem to create limitations for someone with TAR syndrome, many live active and productive lives. They pursue their ambitions just like anyone else. From sports to careers, it’s important on National TAR Syndrome Awareness Day to recognize that those who live with TAR syndrome are not the condition.
The day also recognizes those who support and encourage those with TAR syndrome. Their families and friends are a vital part of their lives. They are the people who believe in them and see them for who they really are.
HOW TO OBSERVE #TARSyndromeAwarenessMonth
During National Tar Syndrome Awareness Month, learn more about this rare condition. Visit the public Facebook page TAR Syndrome Awareness. There, you can learn about the syndrome, meet those who live with it, and show your support. Ask questions and be a part of the awareness campaign.
If you are impacted by TAR syndrome, share your story. Let people know that you are not your syndrome despite the obstacles it might place in your path. You can also give a shout-out to all those people who make a difference in your life.
Another way to show your support is by donating. The TAR Syndrome Association has set up three ways you can give:
- Cash apa using tag $tarsyndromeawareness
- Sponsoring the TAR Syndrome Awareness Walk on April 2nd, 2022.
You can also support proclamations in your state and at the federal level. When you participate in the day, be sure to use #TARSyndromeAwarenessMonth and share it on social media.
NATIONAL TAR SYNDROME AWARENESS MONTH
Jylan Ross and the Uniquely Me Foundation/TAR Syndrome Association launched National TAR Syndrome Awareness Month in 2021 to educate the public about this rare condition and improve support for those living with TAR. Ross was born with TAR syndrome, and he strives to bring more understanding of the condition while also encouraging and inspiring others who live with it. He knows he doesn’t campaign for more research, awareness, and support alone. His family, including his parents Brenda Ross and Robi Berry, his grandparents Beverly Ross and Geraldine Berry, and friends such as Ehmad Adams, Chevi Price, Lasha Haddix, Christal Sharp, CharKala Stigall, Nicole Coats, Markeisha Brown, Nikkisha Brown, Mae Burgess, and Lakeesha Turpin among many others, believe in Ross’s drive. They followed in the footsteps of Morgan Robinson, the first person to sign a petition for TAR Syndrome Awareness Month, and have encouraged Ross to pursue this mission.
Ross hopes that by bringing awareness to TARS syndrome, people will look at the condition in a different light – that they will see its similarities and differences and support more research and education on the condition.
Kentucky Governor Andy Beshear proclaimed the first TAR Syndrome Awareness Month in 2020. Soon after, several other states issued proclamations.
In 2022, National Day Calendar proclaimed National TAR Syndrome Awareness Month to be observed annually in April.