A light at the end of the tunnel
Two women share their personal journeys with Myasthenia Gravis, a rare autoimmune disease marked by muscular weakness without atrophy.
Ester started seeing double in 2017, but brushed it off as being tired, a thought shared by her ophthalmologist at the time. Her double vision quickly turned into droopy eyes where Ester was no longer able to keep her left eye open. After an MRI was done, she was referred to a neurologist who sent her for various tests and finally diagnosed her with Myasthenia Gravis.
“I began treatment immediately and quickly learnt steroids were my muscle’s best friend and if the dose is reduced, my body goes into a crisis.”
Myasthenia Gravis is a rare autoimmune disease marked by muscular weakness without atrophy, explains Ester.
“In laymens terms it affects the way my muscles work. Whenever I’m in crisis it means I am experiencing difficulty in breathing, droopy eyelids, double vision, weakness in arms and legs and problems with swallowing,” she says.
Her treatment is costly and her levy can go as far as N$10 000 and Ester has been in and out of the hospital since her diagnosis.
She admits the beginning was tough with trying to find the right dose for her as it turned out she was allergic to most medicine.
Aside from Myasthenia Gravis Ester also suffers from Type 2 Diabetes and Hypertensice Heart Disease. She had a Thymectomy surgery in May 2019, a right hip replacement in March 2020 and a left hip replacement in September 2020. The double hip replacement was caused by a high intake of steroids. Ester’s treatment includes Mestinon, Methotraxate, Caltrate, Folic Acid, Amlodipine and Diamacron.
At the beginning of her diagnosis Ester says it felt like a life sentence.
“I was a young woman with a bright future ahead. With one sentence ‘you have Myasthenia Gravis’, everything changed. I went through body changes and at some point I couldn’t even recognize myself in the mirror, in fact, I’ve avoided mirrors!”
She is however grateful for her village of doctors, nurses, friends and family and their endless support which Ester describes as “incredible”, always available for her many hospital trips.
“I hold my head high and face this thing by taking each day as it comes. I had to accept the new me - strong, but very much dependent. I had to learn when to ask for help. My smile is living proof that the future looks bright. And indeed, there is a light at the end of the tunnel. Whatever situation you may be facing, don’t give up, just get back up! You have no idea how many times I have fallen, but kept getting up, because life is beautiful and we all deserve it. Fight for yours!”
The bigger the battle, the bigger the testimony
After suffering intense muscle pain and losing 30 kilograms in 2 months from January 2023, Michelle was diagnosed with Myasthenia Gravis in September last year.
Her journey was intense as she totally lost her independence, says Michelle.
“I was unable to comb my hair, brush my teeth or even hold a glass. The support from my family carried me through.”
Immediately after she was diagnosed, she started with treatment. Michelle’s body accepted the meds very well, but she however started losing her hair to the extent that she in November 2023 decided to shave her head.
This month marks 4 months without intense pain, the little pain that pops up, she can handle.
“I am independent and living a normal life, gaining weight and my hair is growing!”
Living with a rare disease is not a death sentence, says Michelle, but actually rather a blessing in disguise.
“Through all the pain and suffering, I grew closer to my Creator, my God and we have a better relationship. Remember the bigger the battle, the bigger the testimony. I am living proof that He is the Way maker, Miracle worker, Promise keeper. Whatever disease you are diagnosed with, accept it, own it and embrace the journey!”
Did you know?
Diagnosis
Symptoms tend to reach their peak in severity within one to three years of initial diagnosis.
STATS
Facts
*It most commonly impacts young adult women (under 40) and older men (over 60)
*It can occur at any age, including childhood.
*It is not inherited nor is it contagious.
*Occasionally the disease may occur in more than one member of the same family.
“I began treatment immediately and quickly learnt steroids were my muscle’s best friend and if the dose is reduced, my body goes into a crisis.”
Myasthenia Gravis is a rare autoimmune disease marked by muscular weakness without atrophy, explains Ester.
“In laymens terms it affects the way my muscles work. Whenever I’m in crisis it means I am experiencing difficulty in breathing, droopy eyelids, double vision, weakness in arms and legs and problems with swallowing,” she says.
Her treatment is costly and her levy can go as far as N$10 000 and Ester has been in and out of the hospital since her diagnosis.
She admits the beginning was tough with trying to find the right dose for her as it turned out she was allergic to most medicine.
Aside from Myasthenia Gravis Ester also suffers from Type 2 Diabetes and Hypertensice Heart Disease. She had a Thymectomy surgery in May 2019, a right hip replacement in March 2020 and a left hip replacement in September 2020. The double hip replacement was caused by a high intake of steroids. Ester’s treatment includes Mestinon, Methotraxate, Caltrate, Folic Acid, Amlodipine and Diamacron.
At the beginning of her diagnosis Ester says it felt like a life sentence.
“I was a young woman with a bright future ahead. With one sentence ‘you have Myasthenia Gravis’, everything changed. I went through body changes and at some point I couldn’t even recognize myself in the mirror, in fact, I’ve avoided mirrors!”
She is however grateful for her village of doctors, nurses, friends and family and their endless support which Ester describes as “incredible”, always available for her many hospital trips.
“I hold my head high and face this thing by taking each day as it comes. I had to accept the new me - strong, but very much dependent. I had to learn when to ask for help. My smile is living proof that the future looks bright. And indeed, there is a light at the end of the tunnel. Whatever situation you may be facing, don’t give up, just get back up! You have no idea how many times I have fallen, but kept getting up, because life is beautiful and we all deserve it. Fight for yours!”
The bigger the battle, the bigger the testimony
After suffering intense muscle pain and losing 30 kilograms in 2 months from January 2023, Michelle was diagnosed with Myasthenia Gravis in September last year.
Her journey was intense as she totally lost her independence, says Michelle.
“I was unable to comb my hair, brush my teeth or even hold a glass. The support from my family carried me through.”
Immediately after she was diagnosed, she started with treatment. Michelle’s body accepted the meds very well, but she however started losing her hair to the extent that she in November 2023 decided to shave her head.
This month marks 4 months without intense pain, the little pain that pops up, she can handle.
“I am independent and living a normal life, gaining weight and my hair is growing!”
Living with a rare disease is not a death sentence, says Michelle, but actually rather a blessing in disguise.
“Through all the pain and suffering, I grew closer to my Creator, my God and we have a better relationship. Remember the bigger the battle, the bigger the testimony. I am living proof that He is the Way maker, Miracle worker, Promise keeper. Whatever disease you are diagnosed with, accept it, own it and embrace the journey!”
Did you know?
Diagnosis
Symptoms tend to reach their peak in severity within one to three years of initial diagnosis.
STATS
Facts
*It most commonly impacts young adult women (under 40) and older men (over 60)
*It can occur at any age, including childhood.
*It is not inherited nor is it contagious.
*Occasionally the disease may occur in more than one member of the same family.
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