Hot Wheels for Dani
Donation protected
Hello everyone,
My name is Dani, and I’m 26 years old. I have both POTS, a heart disorder, and Ehlers Danlos Syndrome, a connective tissue disorder. I have often felt that a wheelchair would make my life easier, safer and more comfortable, however, I’ve been putting off getting a wheelchair for a long time. I’ve used a combination of pain medicine, braces, crutches, and canes to get through my day to day. But as I’ve grown older and found a more supportive circle of friends, I’ve realized that I’m putting myself and my body through unnecessary pain and injury, and I looked into finding a better way to cope.
Generally, I’m a pretty active person. I go to conferences and theme parks. I enjoy outings with friends. But right now, my illnesses are holding me back from doing those things. I’m missing out on things simply because it’s too painful and exhausting to attempt them. I don’t want to be limited by what my body can accomplish, and I don’t want to be living in pain every day when some of that is preventable. I'm at a point now where these issues are having a serious impact on my life, and I'd like to get a chair as soon as possible to bring back some of the quality of life I've been missing. I'll be travelling throughout the summer, and having a chair of my own will make that worlds easier.
I have a combination of two disorders that make day to day physical activity a struggle. Most people’s bodies naturally compensate through a series of bodily responses to the stressors of being upright. My body doesn’t do this well because of something called POTS. If I stand too quickly, or sometimes if I stand at all, I’m overwhelmed with lightheadedness and nausea. Even on good days, poor circulation means that I get easily exhausted and have trouble with extended physical activity.
The other illness, Ehlers Danlos Syndrome, makes me prone to injury, particularly overuse injuries. It’s a genetic condition that results in poor quality collagen. The parts of my body that are supposed to flex and move often move too far and my muscles and ligaments don’t adequately support my joints. My knees are prone to partial dislocation. My feet end up with stress fractures and irritated ligaments due to fielding more pressure than they should. I spend more time than not in braces and casts to either prevent injuries or protect them. Even after something as simple as a day of work, I come home aching and in pain.
I started renting wheelchairs when I needed to do particularly difficult amounts of physical activity. I use a chair in the airport to make travel easier on my body. I use a chair when I visit theme parks to ensure I can get further than the gate, and that I can keep up with my friends. Using the chair settles the fight between my cardiovascular system and gravity, and protects my fragile joints and limbs. Using a fraction of the energy I would normally need, I can accomplish so much more with this chair than I can without it.
After plenty of research, I’ve been able to find a lightweight chair that I’d be able to load and travel with myself as well as self propel pretty easily. The particular chair I am looking to purchase is the TiLite Aero X Foldable Ultralight Wheelchair. With the right wheels, this chair costs about $1,700. In addition to the cost of the chair, I am upgrading the wheels to a solid wheel which requires less effort in pushing with a light tread to make it the most versatile for various surfaces. The small upgrade will give a lot of return on my ease of use.
While not a standard wheelchair, this chair will alleviate my pain and help me mitigate my illnesses in a way no others can. Due to my fatigue problems and increased risk of injury, I need a very particular type of chair. Standard chairs are weighty and bulky. Transporting and using a heavy standard chair would result in even more overuse injuries Traditional rigid chairs also made travel a headache so I need something collapsible and portable.
Having a chair that works for me means less struggle and more independence. It means being able to be more active. It means less pain and being able to do more of what I love. I’m tired of being held back by my illnesses, and I want to take this push forward.
My name is Dani, and I’m 26 years old. I have both POTS, a heart disorder, and Ehlers Danlos Syndrome, a connective tissue disorder. I have often felt that a wheelchair would make my life easier, safer and more comfortable, however, I’ve been putting off getting a wheelchair for a long time. I’ve used a combination of pain medicine, braces, crutches, and canes to get through my day to day. But as I’ve grown older and found a more supportive circle of friends, I’ve realized that I’m putting myself and my body through unnecessary pain and injury, and I looked into finding a better way to cope.
Generally, I’m a pretty active person. I go to conferences and theme parks. I enjoy outings with friends. But right now, my illnesses are holding me back from doing those things. I’m missing out on things simply because it’s too painful and exhausting to attempt them. I don’t want to be limited by what my body can accomplish, and I don’t want to be living in pain every day when some of that is preventable. I'm at a point now where these issues are having a serious impact on my life, and I'd like to get a chair as soon as possible to bring back some of the quality of life I've been missing. I'll be travelling throughout the summer, and having a chair of my own will make that worlds easier.
I have a combination of two disorders that make day to day physical activity a struggle. Most people’s bodies naturally compensate through a series of bodily responses to the stressors of being upright. My body doesn’t do this well because of something called POTS. If I stand too quickly, or sometimes if I stand at all, I’m overwhelmed with lightheadedness and nausea. Even on good days, poor circulation means that I get easily exhausted and have trouble with extended physical activity.
The other illness, Ehlers Danlos Syndrome, makes me prone to injury, particularly overuse injuries. It’s a genetic condition that results in poor quality collagen. The parts of my body that are supposed to flex and move often move too far and my muscles and ligaments don’t adequately support my joints. My knees are prone to partial dislocation. My feet end up with stress fractures and irritated ligaments due to fielding more pressure than they should. I spend more time than not in braces and casts to either prevent injuries or protect them. Even after something as simple as a day of work, I come home aching and in pain.
I started renting wheelchairs when I needed to do particularly difficult amounts of physical activity. I use a chair in the airport to make travel easier on my body. I use a chair when I visit theme parks to ensure I can get further than the gate, and that I can keep up with my friends. Using the chair settles the fight between my cardiovascular system and gravity, and protects my fragile joints and limbs. Using a fraction of the energy I would normally need, I can accomplish so much more with this chair than I can without it.
After plenty of research, I’ve been able to find a lightweight chair that I’d be able to load and travel with myself as well as self propel pretty easily. The particular chair I am looking to purchase is the TiLite Aero X Foldable Ultralight Wheelchair. With the right wheels, this chair costs about $1,700. In addition to the cost of the chair, I am upgrading the wheels to a solid wheel which requires less effort in pushing with a light tread to make it the most versatile for various surfaces. The small upgrade will give a lot of return on my ease of use.
While not a standard wheelchair, this chair will alleviate my pain and help me mitigate my illnesses in a way no others can. Due to my fatigue problems and increased risk of injury, I need a very particular type of chair. Standard chairs are weighty and bulky. Transporting and using a heavy standard chair would result in even more overuse injuries Traditional rigid chairs also made travel a headache so I need something collapsible and portable.
Having a chair that works for me means less struggle and more independence. It means being able to be more active. It means less pain and being able to do more of what I love. I’m tired of being held back by my illnesses, and I want to take this push forward.
Organizer
Dani Palmer
Organizer
King George, VA