Sickle cell is the most common genetic disease within the United States, and approximately 300,000 babies are born with it worldwide every year; yet is one of the least funded diseases. I personally believe that if more people knew about sickle cell and the devastating affects it has on those battling it, and their loved ones, they would be compelled to do more. More doesn’t just mean money, it means educating, lobbying for congressional changes, providing a meal, or a break for a parent who has been at their child’s hospital bedside for days on end without any rest.
The 8th Annual Walk and Bike for Sickle Cell is an event to raise awareness, inspire, and ignite positive energy throughout the community, and everyone is encouraged to attend. Sickle cell is a disease that frequently lacks a public spotlight. However, individuals and their families face the hardships that accompany this disease far too often for it to be omitted from people’s radar.
Two days ago, our two-year-old son returned home from his 16th or 17th hospital admission. He woke up the morning of his admission playing and ready to tackle what the day had to offer him. At around noon time, he was writhing in pain and his stomach was hard and ballooned outward. This is the fourth time he had gone in with similar symptoms. The culprit was a sickle cell crisis within his bowel. The crisis shut down his bowel and caused gas to back up into his abdomen. He was in extreme pain, became lethargic and quickly became very dehydrated.
This occurrence is not unusual for someone with sickle cell disease. As a matter of fact, it can get much, much worse. When a person with sickle cell disease has a “crisis,” they experience immense pain because the area of the body that is experiencing the “crisis” is not receiving oxygen. All organs and tissues are affected, including the heart, lungs and brain.
It is imperative to note that the effects of sickle cell disease go beyond pain during crises. Persons with sickle cell tend to have stunted growth and learning and/or speech delays or a combination of the three. They are at great risk for terminal infections, jaundice, strokes, heart attacks and organ failure.
Along with the impact sickle cell has on the individual battling it, it greatly affects those caring for someone with the disease. In our case, sickle cell has impacted my husband’s employability, our ability to be social, our daily activities and our involvement within our community. We seem to live and breathe sickle cell. There is no way I could convey the devastation that comes along with sickle cell disease within one blog. The disease can truly be a nightmare that few seem to awake from.
Not every community has a support system in place for families affected by sickle cell. Seattle however does! The Metropolitan Seattle Sickle Cell Task Force is a network of families made up of people who either battle sickle cell disease, have lost a loved one or two or three to sickle cell, are caring for someone with sickle cell or who have been led to support those impacted by this disease. The Task Force funds a camp held annually in August for youth who battle the disease and their siblings. The campers get to attend camp without a cost to them. Volunteers are the backbone to Sickle Cell Camp.
The main fundraiser for Sickle Cell Camp is The 8th Annual Walk and Bike for Sickle Cell that commences annually in September. This year, it will be held on Saturday, September 7, 2013 at Seward Park from 8:30 a.m. until about 1:00 p.m. At the walk, attendees will get a chance to listen to stories of triumph, bravery, strength and in some cases loss. There are many activities for both children and adults. There will be food, music and the opportunity to speak with medical professionals to ask any technical questions you may have. The environment of the walk is warm, welcoming and fun!
To learn more about the sickle cell community, the walk and how to get involved please visit http://mssctf.org/, or call our Community Coordinator, Foxy, at 253-226-5578!
Thank you for taking the time to read this blog and each of us looks forward to seeing you at the walk this year!