Chloe has Myasthenia Gravis
Donation protected
My name is Kristin, I am a single mom. I have a son, and a 16 year old daughter, Chloe. She was a healthy teenager until about 2 1/2 months ago. On October 22, 2015 at UC Davis Hospital we received a life changing diagnosis. I was told my daughter has Myasthenia Gravis, an incurable auto immune disease. The symptoms my daughter was having were difficulity speaking, smiling, swallowing, eating, seeing, and walking.
Previously, I had taken her to another hospital close to our home where we were told she needed glasses and was discharged. I then drove her to UC Davis where she was diagnosed.
Since October 22 she has spent most of her days in the hospital at UC Davis, undergoing treatments because of the four MG crises she has had. So far she has endured two rounds of IVIG, one round of Plasmaphersis and now she is currently in the hospital receiving IVIG again. We have been trying since October to help her receive the best treatments and get her healthy enough to have her thymus gland taken out. She has had too may "crises" to have this done. She is on a very high dose of steroids which has given her "moon face", which has added to the devastation to her self-esteem. She has to be on a low dose of steroids or off, to get the surgery but her symptoms are too severe to lower the dose. It is thought that the thymus gland irritates the disease, yet she is not strong enough and sypmtom free enough to get off the steroids; it just goes in circles. Once she gets the surgery it can take up to a year to see the results.
She is now enrolled in "Home and Hospital" for school and trying to become strong enough to go home and have a nurse come to our home to give her treatments there.
I am not on this site to ask for medical expenses, as those are covered. I am simply on here because I am an Independant Contractor. If I do not work I do not get paid. I have been by her bedside and have not been able to work.
The donations will go towards expenses of being out of town, staying by her side, and us not being homeless when she goes in to remission. When, not if.
She has such a long road ahead of her and I am trying to be with her every step of the way. I have exhausted my finances to be with her here in the hospital, There is just no way I could have seen this coming, there is no way to plan for such a thing.
Prayers are also my request. I would appreciate any help in raising awareness for this terrible disease! Maybe raising awareness will someday lead to a cure!
Myasthenia Gravis (MG) is an autoimmune disease. It targets the communication point between the nerve and muscle (called the “neuromuscular junction.”) In MG, the immune system attacks the neurotransmitter receptors on muscle tissue. Since the muscles can’t receive the signal to contract, people with myasthenia become weak. MG causes weakness in voluntary muscles that worsens with activity and improves with rest.
MG’s primary symptoms
Symptoms:
Drooping of one or both eyelids
Double or blurred vision
Weakness in arms, hands, fingers, neck, face or legs
Difficulty in chewing, smiling, swallowing or talking
Excessive fatigue in exercised muscle groups
Shortness of breath, difficulty taking a deep breath or coughing
, MG can result in difficulty chewing, smiling, swallowing, talking or breathing.
Immune globulin therapy can be used to treat rapidly worsening MG. Immune globulin is a human blood product pooled from multiple donors who are carefully screened. By providing the body with normal antibodies from donated blood, IVIg treatments appear to temporarily modify the immune system. For most individuals, MG weakness typically improves within a week of treatment and lasts for several weeks or months. IVIg treatments are very expensive and offer short-term relief from MG symptoms until longer acting immune modifying treatments are effective.
Plasmapheresis, or “plasma exchange,” is a procedure that removes antibodies—both “bad” and “good”—from the blood. Over several hours, blood is gradually removed through a special intravenous line, plasma which contains antibodies is separated off, and then the antibody-free blood is returned to the body along with a blood product called albumen to replace some of the proteins lost in the procedure. This treatment doesn’t affect the body’s ability to make more antibodies, and so the relief it provides is generally temporary. It also is very expensive.
Plasmapheresis is used for patients who have severe MG symptoms, or who need to improve strength before surgery. It’s also used periodically for those who don’t respond to other treatments.
Previously, I had taken her to another hospital close to our home where we were told she needed glasses and was discharged. I then drove her to UC Davis where she was diagnosed.
Since October 22 she has spent most of her days in the hospital at UC Davis, undergoing treatments because of the four MG crises she has had. So far she has endured two rounds of IVIG, one round of Plasmaphersis and now she is currently in the hospital receiving IVIG again. We have been trying since October to help her receive the best treatments and get her healthy enough to have her thymus gland taken out. She has had too may "crises" to have this done. She is on a very high dose of steroids which has given her "moon face", which has added to the devastation to her self-esteem. She has to be on a low dose of steroids or off, to get the surgery but her symptoms are too severe to lower the dose. It is thought that the thymus gland irritates the disease, yet she is not strong enough and sypmtom free enough to get off the steroids; it just goes in circles. Once she gets the surgery it can take up to a year to see the results.
She is now enrolled in "Home and Hospital" for school and trying to become strong enough to go home and have a nurse come to our home to give her treatments there.
I am not on this site to ask for medical expenses, as those are covered. I am simply on here because I am an Independant Contractor. If I do not work I do not get paid. I have been by her bedside and have not been able to work.
The donations will go towards expenses of being out of town, staying by her side, and us not being homeless when she goes in to remission. When, not if.
She has such a long road ahead of her and I am trying to be with her every step of the way. I have exhausted my finances to be with her here in the hospital, There is just no way I could have seen this coming, there is no way to plan for such a thing.
Prayers are also my request. I would appreciate any help in raising awareness for this terrible disease! Maybe raising awareness will someday lead to a cure!
Myasthenia Gravis (MG) is an autoimmune disease. It targets the communication point between the nerve and muscle (called the “neuromuscular junction.”) In MG, the immune system attacks the neurotransmitter receptors on muscle tissue. Since the muscles can’t receive the signal to contract, people with myasthenia become weak. MG causes weakness in voluntary muscles that worsens with activity and improves with rest.
MG’s primary symptoms
Symptoms:
Drooping of one or both eyelids
Double or blurred vision
Weakness in arms, hands, fingers, neck, face or legs
Difficulty in chewing, smiling, swallowing or talking
Excessive fatigue in exercised muscle groups
Shortness of breath, difficulty taking a deep breath or coughing
, MG can result in difficulty chewing, smiling, swallowing, talking or breathing.
Immune globulin therapy can be used to treat rapidly worsening MG. Immune globulin is a human blood product pooled from multiple donors who are carefully screened. By providing the body with normal antibodies from donated blood, IVIg treatments appear to temporarily modify the immune system. For most individuals, MG weakness typically improves within a week of treatment and lasts for several weeks or months. IVIg treatments are very expensive and offer short-term relief from MG symptoms until longer acting immune modifying treatments are effective.
Plasmapheresis, or “plasma exchange,” is a procedure that removes antibodies—both “bad” and “good”—from the blood. Over several hours, blood is gradually removed through a special intravenous line, plasma which contains antibodies is separated off, and then the antibody-free blood is returned to the body along with a blood product called albumen to replace some of the proteins lost in the procedure. This treatment doesn’t affect the body’s ability to make more antibodies, and so the relief it provides is generally temporary. It also is very expensive.
Plasmapheresis is used for patients who have severe MG symptoms, or who need to improve strength before surgery. It’s also used periodically for those who don’t respond to other treatments.
Organizer
Kristin Close
Organizer
Modesto, CA
