Raising awareness for sickle cell disease is important to the sickle cell community. Having healthcare providers, caretakers, people without SCD, and even patients, who are educated about sickle cell disease helps us to take steps towards proper treatment in healthcare and our daily lives. As patients, we need education on efficiently managing our disease at home. Healthcare providers need awareness so they will know how to treat us when we turn to the emergency facilities for help. We also need to be able to trust healthcare providers with our lives, so we won't choose to suffer at home out of fear of judgement and improper healthcare. Lastly, nationwide awareness of sickle cell disease will educate the public about the severity of our struggles and our need for more hematologists/sickle cell specialists, especially for adults with SCD.
Thankfully, we have made huge strides in advancements in medicine for sickle cell disease. Recently, two medications to manage SCD was approved by the FDA. Those medicines are Oxybryta, which works by boosting hemoglobin, the oxygen-carrying molecule found in red blood cells; and Novartis, which works by reducing the frequency of vaso-occlusive crises (VOCs) in adults and pediatric patients aged 16 years and older with sickle cell disease. This is good news for the sickle cell community! It is something that we have been wanting and needing for a very long time. However, we still have a long way to go. There are still a lot of changes to be made to ensure that patients are seen, heard, treated fairly, accommodated; and receive proper treatment in emergency facilities and by healthcare providers, caretakers, and the public.
Taking all this into consideration, our goal is to start conversations about sickle cell disease through fashion. Through our designs, we have shared our experiences with living with sickle cell disease. Each design was created with the intent of expressing our feelings about hardships we've faced. We hope to spark enough curiosity, so people will want to know the meaning behind our designs. We intend to use these moments to educate people about sickle cell disease and our experiences with it. We understand the importance of awareness and the importance of properly representing the sickle cell community. With this in mind, we hope to advocate for SCD and positively represent our community, while looking good doing it.