This is my senior show at the New Hampshire Institute of Art. I did my show on Shachman Diamond Syndrome.
When I was born I was diagnosed with Shwachman-Diamond Syndrome (SDS). I had no apparent medical issues as a baby, but they tested me to be on the safe side. The reason for their testing me was that my older sister, Sarah, had been diagnosed with SDS. Due to that diagnosis, they also tested our oldest sister, Jennie, who appeared a healthy child. As it turned out she also had SDS. My sisters and I made medical history because three siblings had never been diagnosed with the disease. Years later there was a family who had four siblings who had the disease, but unfortunately two of them died. So then my sisters and I became the largest amount of siblings with the disease to all live.
When I was born I was diagnosed with Shwachman-Diamond Syndrome (SDS). I had no apparent medical issues as a baby, but they tested me to be on the safe side. The reason for their testing me was that my older sister, Sarah, had been diagnosed with SDS. Due to that diagnosis, they also tested our oldest sister, Jennie, who appeared a healthy child. As it turned out she also had SDS. My sisters and I made medical history because three siblings had never been diagnosed with the disease. Years later there was a family who had four siblings who had the disease, but unfortunately two of them died. So then my sisters and I became the largest amount of siblings with the disease to all live.
In 1960 Doctor Shwachman discovered Shwachman Diamond Syndrome. Shwachman Diamond Syndrome is a very rare genetic disease. About 1 out of 75,000 people have this disease. The disease is caused by a mutation on the 7th chromosome and incurable though treatable. Symptoms of the disease appear between four and six months of age. Children will have a failure to thrive and slow growth and therefore many have short stature. The kids also have pancreatic failure or deficiency, which causes them to be unable to absorb nutrients from food, and due to this inability many patients take enzymes. People with the disease have a lot of blood problems such as Anemia, Neutropenia, and Thrombocytopenia. They also can have bone marrow failure and a sixty percent chance of getting leukemia, They can have skeletal mutations, enlarged liver, lowered immune system that cause them to become sick easily, become prone to infection, and enable them to develop other diseases. Also most women are unable to have children, which can result in many miscarriages, which unfortunately occurred with my sisters.
Over the years my sisters and I have had a few medical issues that affect our daily lives and I think that is why this is an important topic for me. My sister Sarah was very sick as a child. She couldn’t gain weight and had a number of other medical issues. At first she had a nose tube but her body rejected it so then she had a stomach tube which she had until she was about nine. So every night Sarah had to get plugged into a machine and while she slept formula was pumped into her stomach. As she got older she became healthier and a lot of the symptoms of the disease went away but she did have a few issues with pregnancy. She had to have blood platelet transfusions. My sister Jen had a very healthy childhood. Jen was very healthy until she turned twenty. She has hip dysplasia and may need surgery to correct it some day. She developed osteoporosis at the age of twenty-five. She has been hospitalized three times in the past two years with merca. Once she was hospitalized for fourteen days and came very close to dying. She can’t really have a job because she faints a lot so she stays home a lot. She has been told that she can never have children but she hasn’t given up. We all have blood issues such as anemia, low blood platelets and low white blood cells. I think all three of us have different ways of dealing with the disease but none of us has given up hope.
I designed a lot of tattoos to support and spread awareness of this genetic disease. It is called Shwachman Diamond Syndrome.
