Bethany's Chronic Illness Fund
Donation protected
I have had chronic pain my entire life and debilitating migraines since I was 8 years old. At first, we thought they were just the growing pains of a child, but as I got older the pain got worse, especially in my hands, and began affecting every aspect of my life. Now that I am 18 years old, there isn't a joint in my body that doesn't ache or hurt throughout the day.
It is difficult for me to do ordinary things, such as open jars/bottles, brush my teeth, play my instruments, type, write, and even eat. I cannot walk for very long anymore, or else my hips and knees will dislocate, becoming swollen and leaving me in excurciating pain. We have had to temporarily rent a wheelchair just so I can make it to my few college classes, as walking across campus is just simply not an option right now.
Additionally, my stomach is usually on the fritz and oftentimes, eating food can leave me in pain or unable to digest what I have eaten. I am in constant pain and unable to do things that people my age would normally be doing. I have had to give up playing piano and guitar and on most days, drawing and painting are impossible.
The only job I have been able to keep regardless of my disability is one that has me wake up at 5:30 in the morning, a feat which would be possible for a normal person, but leaves me feeling sick and fatigued. When I get overly fatigued, such as from working, I may experience a raised heart rate, dizziness, more migraines, and even potentially fainting spells.
We just recently discovered that the cause of all my pain is a Connective Tissue Disorder known as Ehlers Danlos Syndrome, there is no cure and it is a rare disease. EDS is thought to affect the collagen in a person's body; collagen is like the glue that holds our bodies together. It keeps our joints from dislocating, our skin from stretching, and even aids in the structure of the digestive track. A person with EDS has faulty collagen that does not do its job of holding the body together, which can cause hypermobile joints that ultimately lead to dislocations, skin laxity, and even heart problems (such as Postural Orthostatic Tachycardia Syndrome, which I may also have).
Unfortunately, because this disorder is so rare, most doctors know very little about it and do not know how to treat it. In order to get the proper diagnosis and treatment that I need, my family and I must go to a specialist that does not take insurance, but works only with patients suffering from EDS and related conditions. He is the only person within driving distance that can help me lead a normal life again.
Due to the fact that our insurance will not cover the many visits we will need to get me functioning again, the costs are going to be difficult for my parents and I to cover. We will also need to be buying special braces and finger splints for people with Ehlers Danlos Syndrome that will help my joints not to hyperextend and dislocate, these splints are also not covered by medical insurance.
This fund may not be able to cover all of the costs, but it would certainly help. Any small amount would be much appreciated, as it will help me get the treatment that I need to live my life again.
-Bethany
It is difficult for me to do ordinary things, such as open jars/bottles, brush my teeth, play my instruments, type, write, and even eat. I cannot walk for very long anymore, or else my hips and knees will dislocate, becoming swollen and leaving me in excurciating pain. We have had to temporarily rent a wheelchair just so I can make it to my few college classes, as walking across campus is just simply not an option right now.
Additionally, my stomach is usually on the fritz and oftentimes, eating food can leave me in pain or unable to digest what I have eaten. I am in constant pain and unable to do things that people my age would normally be doing. I have had to give up playing piano and guitar and on most days, drawing and painting are impossible.
The only job I have been able to keep regardless of my disability is one that has me wake up at 5:30 in the morning, a feat which would be possible for a normal person, but leaves me feeling sick and fatigued. When I get overly fatigued, such as from working, I may experience a raised heart rate, dizziness, more migraines, and even potentially fainting spells.
We just recently discovered that the cause of all my pain is a Connective Tissue Disorder known as Ehlers Danlos Syndrome, there is no cure and it is a rare disease. EDS is thought to affect the collagen in a person's body; collagen is like the glue that holds our bodies together. It keeps our joints from dislocating, our skin from stretching, and even aids in the structure of the digestive track. A person with EDS has faulty collagen that does not do its job of holding the body together, which can cause hypermobile joints that ultimately lead to dislocations, skin laxity, and even heart problems (such as Postural Orthostatic Tachycardia Syndrome, which I may also have).
Unfortunately, because this disorder is so rare, most doctors know very little about it and do not know how to treat it. In order to get the proper diagnosis and treatment that I need, my family and I must go to a specialist that does not take insurance, but works only with patients suffering from EDS and related conditions. He is the only person within driving distance that can help me lead a normal life again.
Due to the fact that our insurance will not cover the many visits we will need to get me functioning again, the costs are going to be difficult for my parents and I to cover. We will also need to be buying special braces and finger splints for people with Ehlers Danlos Syndrome that will help my joints not to hyperextend and dislocate, these splints are also not covered by medical insurance.
This fund may not be able to cover all of the costs, but it would certainly help. Any small amount would be much appreciated, as it will help me get the treatment that I need to live my life again.
-Bethany
Organizer
Bethany Faith Harrup
Organizer
New Bern, NC