For those of you who love the San Nicolas family, here is our chance to bless them!
Mallory was diagnosed last Friday with Myasthenia Gravis, a very rare autoimmune neuromuscular disease that effects all of her voluntary muscles which include vision, breathing, swallowing, chewing, and all voluntary movement. It is a lifelong incurable disease that can come and go daily, weekly, monthly or even yearly. Autoimmune means that the body is attacking itself. MG causes her body to make anti-bodies that work against her own nerves and muscles. They attack the healthy nerve pathways to the muscle and cause the muscles to seize. It can effect her lungs, making breathing labored and worst case scenario, stop breathing. Her swallowing and chewing is effected causinng the muscles to stop working and can cause her to choke. It causes double vision, and visual weakness in her eyes and general overall muscular weakness in her arms and legs. For the last three years, she has been experiencing a general deterioration in all of these areas and could not understand why she couldn't complete a simple workout. Her muscles fatigued so quickly that she couldn't complete a set. For those of you who know Mallory, this was very frustrating! Mallory describes it as a rollercoaster ride of uncertainty. One day she can feel great, and the next day feel like she can barely breath and cannot get out of bed. She has been dealing with these issues for the past 3 years and is relieved to have a diagnosis. So the next step is to formulate a plan of attack. Ideally, we want to stop the progression, if at all possible, and help her maintain a good quality of life. There is no cure, so symptom management is EVERYTHING. Stress, Anxiety, Illness and Fatigue are triggers that can make her symptoms worse.
In a recent MRI, the neurosurgeon also discovered, what he believes is a benign brain tumor on her Cerebellum. This may need to be removed at some point, but thankfully isn't causing her any pain or symptoms. Please pray that it doesn't get any bigger or cause any problems.
For more information on MG, please visit: www.womenwithMG.org
How can we help? There are several treatments available, but are considered "experimental", so insurance will not cover them. One treatment, IVIG, costs $39,000 per treatment. This is where they take the bad "antibodies" out and replace them with healthy ones. This requires a 4-5 day hospital stay and lasts for several weeks. This will be considered necessary when the symptoms become diabilitating. Insurance deductibles need to be met as well, adding up to about $20,000 before full coverage. She is also considering symptom management therapy. These therapies can run in the thousands, but they will greatlly increase her quality of life.
Any amount you can donate would be greatly appreciated. The San Nicolas family is loved by so many in our Crossfit and Poway communities. Please spread the word and pass this along to everyone you know, not only to help Mallory, but to spread awareness so that they can find a cure for this very rare disease.
Mallory was diagnosed last Friday with Myasthenia Gravis, a very rare autoimmune neuromuscular disease that effects all of her voluntary muscles which include vision, breathing, swallowing, chewing, and all voluntary movement. It is a lifelong incurable disease that can come and go daily, weekly, monthly or even yearly. Autoimmune means that the body is attacking itself. MG causes her body to make anti-bodies that work against her own nerves and muscles. They attack the healthy nerve pathways to the muscle and cause the muscles to seize. It can effect her lungs, making breathing labored and worst case scenario, stop breathing. Her swallowing and chewing is effected causinng the muscles to stop working and can cause her to choke. It causes double vision, and visual weakness in her eyes and general overall muscular weakness in her arms and legs. For the last three years, she has been experiencing a general deterioration in all of these areas and could not understand why she couldn't complete a simple workout. Her muscles fatigued so quickly that she couldn't complete a set. For those of you who know Mallory, this was very frustrating! Mallory describes it as a rollercoaster ride of uncertainty. One day she can feel great, and the next day feel like she can barely breath and cannot get out of bed. She has been dealing with these issues for the past 3 years and is relieved to have a diagnosis. So the next step is to formulate a plan of attack. Ideally, we want to stop the progression, if at all possible, and help her maintain a good quality of life. There is no cure, so symptom management is EVERYTHING. Stress, Anxiety, Illness and Fatigue are triggers that can make her symptoms worse.
In a recent MRI, the neurosurgeon also discovered, what he believes is a benign brain tumor on her Cerebellum. This may need to be removed at some point, but thankfully isn't causing her any pain or symptoms. Please pray that it doesn't get any bigger or cause any problems.
For more information on MG, please visit: www.womenwithMG.org
How can we help? There are several treatments available, but are considered "experimental", so insurance will not cover them. One treatment, IVIG, costs $39,000 per treatment. This is where they take the bad "antibodies" out and replace them with healthy ones. This requires a 4-5 day hospital stay and lasts for several weeks. This will be considered necessary when the symptoms become diabilitating. Insurance deductibles need to be met as well, adding up to about $20,000 before full coverage. She is also considering symptom management therapy. These therapies can run in the thousands, but they will greatlly increase her quality of life.
Any amount you can donate would be greatly appreciated. The San Nicolas family is loved by so many in our Crossfit and Poway communities. Please spread the word and pass this along to everyone you know, not only to help Mallory, but to spread awareness so that they can find a cure for this very rare disease.