Resetting life after Adult-Onset Myopathy: Acceptance, Endurance, Conquest
- Sudha Bhattacharya
- 4 hours ago
- 20 min read
Welcome to my new series of blogs about stories of Rare Diseases that manifest later in life. Although the defective gene is present from birth, there are no adverse symptoms in childhood, no warning bells, no obvious signals to prepare the individual for the inevitable. When, finally the disease strikes, the young adult is typically on their way to enjoying college life, chasing their dream careers, finding a life partner et al. The disease pronounces a verdict so harsh that life gets divided into a pre- and post-diagnosis era, with the period in between marked by confusion, denial, anger, frustration, depression, and why me? Yet, the human survival machinery does kick in, and the individual comes to terms with a progressively disabling disease that has no treatments, and where you the sufferer must become your only true hope.
GNE Myopathy is one such muscle disorder that typically manifests in the second to third decade of life. The initial symptoms are generally related to weakening lower limbs, frequent falls, altered gait, inability to climb stairs or walk without support. Gradually muscles of upper limbs, shoulder, neck etc. get affected, with the individual becoming wheelchair-bound or bed-bound and totally dependent for daily activities.
The guest blog by Shubhra Sinha, an unusually resilient GNE Myopathy champion, was aptly titled ‘Where there is a will there is a champion’. Here I present the stories of three other strong-willed GNE Myopathy women coming from different socio-economic backgrounds and different life trajectories in their pre-disease era. Their common factor is a mind that constantly strives to improve their condition, even as the body slowly caves in.
Abha (name changed): The scientist who refused to accept a wrong diagnosis
Abha grew up in Varanasi, a tall and lanky girl, not too good in sports but brilliant in her studies, especially science subjects. She went on to pursue M.Sc. Chemistry from Banaras Hindu University. In 2002, even before she graduated, she was selected by a leading pharmaceutical company to work in their R&D centre close to Delhi. She was tasked with organic synthesis of new chemical entities having properties similar to patented drugs. The next three years of her life were really happy, eventful and fulfilling. She liked the challenges of her job, and in 2003 she got married to her life partner, a dynamic executive in a multinational company. In 2005 the couple welcomed their baby daughter, immensely enjoying their new role as parents. Abha secured a one-year maternity leave to take full care of the baby.
2006: the first symptoms of myopathy appear
While taking care of her baby Abha noticed that she was finding it difficult to rise from a squatting position. But no one took it seriously because the body does take time to recover post-pregnancy. After one year, instead of re-joining her job, Abha decided to resign as she did not have a reliable caregiver for her baby. However, a few months later she came across an advertisement for a lucrative position in a public sector company. Abha applied for it just to see how well she could fare in the selection process. Well, she came out on top and secured the job. Now she was in a dilemma. This was an offer too good to forego. She finally decided to take it up and find help for the domestic front. This is the company Abha works for till today.
The nice part was that this company was located close to her home, but it was a huge, sprawling campus. It entailed a long walk from the gate to her office. This was not such a big deal; everyone was doing it; but Abha noticed that she was not able to walk fast, and she felt somewhat unsteady, especially while climbing stairs. This concern turned into a real worry when on multiple occasions she slipped and fell without any obvious reasons.
2006 – 2014: The diagnostic journey
Thinking it to be a pregnancy-related issue, Abha went to see a gynaecologist. The doctor correctly advised her to consult a neurologist, who took her EMG and spine MRI. The tests were normal. The doctor inferred that her problem was possibly due to general weakness and advised her to take calcium and vitamin D.
Despite taking good care of her nutrition Abha found no improvement. She then visited Apollo hospital in New Delhi where a whole panel of neurologists examined her. They did brain MRI, EMG, nerve conduction test etc. All tests were normal, and again, no conclusion could be drawn.
Although clinically nothing serious was detected, Abha could feel the changes in her body. She needed to understand what was happening. In 2007 Abha visited Sir Gangaram hospital in New Delhi to see yet another neurologist. This time the EMG appeared somewhat abnormal. The doctor suspected Myasthenia Gravis (an autoimmune condition), and gave her medication for it. Again, there was no improvement.
Now she decided to visit the neurology department at AIIMS, New Delhi and was examined by Dr. Padma Shrivastava. Dr. Padma admitted Abha to the hospital for a few days to conduct extensive testing, including muscle biopsy. The biopsy showed atrophic (thinner) muscle fibres, but rimmed vacuoles (strongly indicative of GNE myopathy) were not seen. (Unfortunately, rimmed vacuoles are not always visible in muscle biopsy samples of GNE myopathy patients). Her clinical symptoms seemed to match a muscle condition called sarcoglycanopathy (clubbed under a disease group called limb girdle muscular dystrophy or LGMD). While the tests fell short of giving a confirmed diagnosis, Dr. Padma rightly concluded that Abha’s condition was related to muscle and not nerve.
In 2008, Abha’s husband was transferred to Mumbai. Abha joined him there to consult some of the renowned neurologists in Mumbai. They too confirmed the diagnosis of myopathy, but they believed it to be dysferlinopathy, another disease clubbed under LGMD (caused by defect in the dysferlin gene). Since there was no treatment for this disease, except keeping one’s muscles active by regular exercise, the doctors had nothing further to offer.
Why did two sets of highly competent neurologists link Abha’s condition with LGMD? It is interesting to note that GNE myopathy has several symptoms in common with some of the myopathies listed under LGMD. These include age of disease onset, muscle groups involved, and slow progression of disease. Since LGMDs have been better known to neurologists for a long time, GNE myopathy was misdiagnosed as LGMD very frequently. This has changed since the last decade as more patient cohorts have been examined, knowledge about the genetic defect in GNE myopathy has been extensively recorded, the disease mechanisms are being studied, and possible treatment options are being developed globally. Indian neurologists now recognize that GNE myopathy is one of the most prevalent adult-onset myopathies in India. As we shall see in the subsequent stories, the correct diagnosis of GNE myopathy is becoming common in India, fuelled by awareness of the disease amongst neurologists, and the easier availability of DNA testing. This is a fortunate development as correct diagnosis is crucial to receive the right treatment. Gene therapy can only work if the correct disease gene has been identified.
The diagnosis of dysferlinopathy based on a few clinical symptoms did not convince Abha. It was a genetic disorder and no genetic testing had been done on her. As she scanned the internet, she found Jain Foundation in USA which exclusively worked on dysferlinopathy. She corresponded with them and sent them her DNA sample to test for dysferlin gene mutation. The test came out negative. She was essentially back to square one.
2009 – 2010: There has to be a treatment for this condition
Whatever this mysterious condition was, Abha’s family and friends refused to believe that it could not be treated. She just needed to try options outside allopathy.
Abha decided to give this a serious shot. She began trying out alternative therapies, starting with ayurveda panchkarma, and massages offered by the Delhi branch of Arya Vaidyashala, Kottakal. After a few months of intensive treatment there was no noticeable benefit. She then switched to homeopathy with a doctor known to their family. Here too she met disappointment as the treatment was ineffective. The hunt for a treatment that could stop the disease in its tracks has remained elusive to this day.
2010 – 2014: Managing home and job
In 2010 Abha’s husband moved back to Delhi. Her daughter was now a school-going kid. Abha was getting weak and had to depend on a full-time help to assist with the housework, and to take care of her daughter while she was at work. Finding a reliable help was, and continues to be a major challenge for Abha. Fortunately, with help from neighbours, Abha ensured her daughter grew up in a secure environment. At work, Abha’s pleasing personality and brilliant intellect earned her the admiration of her colleagues and there was always help available. In spite of growing challenges, Abha was managing both the home and job fronts admirably, with the unflinching support of her husband. Her daughter was growing up happily and Abha’s life revolved around her. At work she was excelling. In 2015 she received the WIPS (Women in Public Service) award for the best woman employee, in a grand ceremony at Vigyan Bhavan. Abha has never allowed her physical disability to compromise with excellence in delivering every project!
2014: Diagnosis at last
Abha had been living with her progressively debilitating condition for over eight years. So far, she had not met a single other patient of this condition, and there seemed no point in visiting neurologists any more. But she had not given up. Every now and then she would scour the internet about information on muscle diseases and muscular dystrophies. During one such search she stumbled upon a USA-based company called Ultragenyx which was developing and testing a drug for a rare muscle disorder called GNE myopathy. A team of scientists and clinicians, primarily working at the Newcastle University, UK were making a registry of GNE myopathy patients worldwide. Abha realized that the symptoms of GNE myopathy matched hers. She immediately corresponded with them and shared all her reports. They agreed to do a DNA test on her blood sample.
The DNA test came out positive for GNE myopathy! She had never heard of this disease, but she had her diagnosis at last- entirely by her own efforts. For the first time she could put a name to her condition and learn specifically about the science behind it. Very soon afterwards she spotted Indian patients of GNE myopathy online and a network began to form. In 2015, the first GNE myopathy patient group, World Without GNE Myopathy (WWGM) took shape in India and provided a platform for patients to meet and interact with each other. Abha felt a sense of empowerment as she was not alone, and there was a possibility of treatments emerging from new research in this disease.
2017 – 2018: The lure of untested treatments; stem cell therapy
The GNE gene, which is mutated in GNE myopathy, is needed by the body to synthesize an essential sugar called sialic acid (SA). Ultragenyx had set up a clinical trial to test whether SA supplementation could slow down the devastating effects of GNE mutations. Unfortunately for the entire GNE myopathy community, the data showed very minimal benefit of SA supplementation, if at all. While this was a big blow, the good news was that several groups had initiated efforts to develop gene replacement therapy for GNE myopathy. This, if it worked, could be a game changer as it would provide the body with the functional GNE protein itself. But, for the technology to translate from lab to an efficacious, affordable drug could take decades.
For Abha, and others like her whose disease had progressed substantially, time was running out. Abha needed a treatment desperately to help preserve her functional muscles. Stem cell therapy seemed to be the answer. It was being offered by Dr. Alok Sharma in Mumbai. The advertising and packaging was so professional, it left little reason for a desperate patient to doubt its veracity. In reality, it was a totally untested treatment for a genetic myopathy. Apart from the money and time Abha spent to receive this therapy, the unfortunate part was that it left her worse than before. Perhaps it was due to the rigorous exercise they made Abha do several times a day after receiving the stem cell treatment. Her muscles became much weaker, and soon afterwards she became dependent on a wheelchair.
2019 – present: Longing for a treatment to preserve some muscle and reduce dependence
Abha is now fully wheelchair bound as her legs are too weak. Her work place has been very understanding and she has been assigned a desk job. She has got her car modified so that the wheelchair can be wheeled into the back seat. But sitting in the wheelchair for the whole day becomes very tiring. Her fingers are also getting weak, and she needs help in routine daily activities. Turning herself in bed is another challenge. Abha longs for the day when a treatment would be available to help her retain some level of independence.
As it stands, Abha is leading a life of curtailed dreams. She had always loved to travel and explore new places. This has now become a rare activity and she has to be content with being an arm-chair traveller visiting new places through books and videos. Socializing and attending gatherings and functions is possible only if the location is wheelchair accessible, and she has an escort.
The one great satisfaction Abha has is that her daughter will soon be completing her B. Tech. from Manipal Institute of Technology and will carve out her professional career. Abha’s greatest desire is to stay physically capable enough to organize a grand wedding for her daughter whenever that moment arrives. The overarching question in her mind- Will a treatment emerge in time?
Jennifer Annal Mary: Yet to come to terms with her disability
Jennifer belongs to Madurai in Tamil Nadu. Her father was posted in the army, and till age 10 she grew up in various parts of Haryana. Subsequently, along with her mother and siblings they moved to Madurai where she has lived ever since. Her school life was very happy. She was good both at her studies and in sports. She was a district-level player in badminton, and was very active in kabaddi, and obtained the Rashtrapati award for Guides and Scouts.
She passed high school in 2005 and joined Madurai Kamaraj University for B.Sc. in Information Technology. After graduating she took up a job, and also continued with her studies. She obtained her B.Ed. degree, followed by Master’s in Computer Applications.
In 2012 Jennifer got married. It was an arranged marriage with a distant relative. The same year her daughter was born, three months premature. She left her job for a year to bring up her baby daughter. By 2013 both she and her daughter were in good health, and she again took up a job, managing home and job very well.
2017: Second pregnancy and start of myopathy symptoms
In June 2017, Jennifer gave birth to their second child, a son. The pregnancy was smooth, but she tended to fall easily on an uneven surface, and had difficulty getting up from the floor. She attributed this to her weight gain, which she never lost after the delivery. Gradually she noticed that she could not walk fast, and was having difficulty climbing stairs. Something seemed amiss.
2018 – 2019: GNE Myopathy diagnosed
Jennifer went to see her gynaecologist, who referred her to orthopaedics. Here she was correctly guided to see a neurologist at Apollo hospital, Madurai. Jennifer was certainly in luck. The neurologist drew the right interpretations. Jennifer had foot drop due to weakening muscles in the lower limbs. Since it could be a rare condition which the doctor had not encountered, instead of giving her a vague diagnosis he guided her in the right direction. She should go to NIMHANS, Bengaluru and see Dr. A. Nalini for a more accurate diagnosis. Dr. Nalini happened to be one of the very few neurologists in the country who had been actively working on rare myopathies and muscular dystrophies, including GNE myopathy. This was also the time when DNA testing was getting accessible in India. Dr. Nalini suspected Jennifer’s condition to be GNE Myopathy and got it confirmed by DNA testing. Jennifer got her diagnosis within a year of initial symptoms, quite in contrast with Abha, a decade earlier, who had to contend with misdiagnoses galore! It is truly heartening that many neurologists in the country are now familiar with rare myopathies and guide their patients for genetic testing to get an accurate diagnosis.
2019 – 2020: Diagnosis yes, but what next?
At NIMHANS Jennifer was told the cold truth about her condition. It was a progressively debilitating, rare disease with no treatment. She would gradually lose muscle mass and may ultimately need a wheelchair. Regular exercise would help to preserve muscles and she was recommended a set of exercises. Apart from that there was little help the doctors could offer.
All of a sudden, Jennifer’s world seemed to be collapsing. What was this disease she had never heard of? Why was there no treatment? How would she pull through life if she was disabled. She had a lovely home with her two adorable children and a doting husband. Who will take care of them if she herself became handicapped?
Reactions at home: from blame to pity
Jennifer, who had always been bold and energetic, and called the shots with her peers, now felt diminished, defeated and wrecked. When news about her condition broke at home, her husband’s family had nothing but rebuke for her. They cursed their son’s luck and blamed her for ruining his life. At the other end, her mother’s reaction was stunned silence and tears. The pain in her eyes was unbearable for Jennifer. A calm reassurance which Jennifer desperately needed in that initial phase was hard to find. Fortunately, her husband stood firmly with her, giving her the courage to ward off negative emotions. She cried a lot in those initial days. Gradually, the innocent needs and demands of her children drew her back into the domestic routine. She began to shed off the cloak of confusion and self-pity that she had wrapped around herself.
Resetting life: The new normal
GNE myopathy is a slowly progressing disease. When Jennifer got her diagnosis, it was not as though she suddenly became severely disabled. There was no change in her physical abilities. She was running the house as before and her energy levels had not diminished. But the psychological impact was heavy- not least due to the adverse reaction of her in-laws. They stopped all communication with her as though she were a criminal. They should have known better. They were both well-educated, and were headmasters of government-run schools in their locality!
If people who knew you closely, and with whom you shared a strong family bond, could treat you like an untouchable, what could be expected from a stranger in the street? She had started walking awkwardly due to her foot drop, and now she became acutely conscious of it. She was afraid to draw stares from strangers and adverse or pitying remarks from acquaintances. Her solution-- cut off from the world; just stay home.
2020 – Present: Home-bound but happy
The decision not to step out of home meant Jennifer had to give up her job. Her husband works as a photographer and earns money during weddings and events. But income can be erratic with dry periods when work is low. To manage the finances Jennifer does all the domestic work on her own with no maid for help. She has the full support of her husband. Although her energy levels are still adequate and she can move at home without much support, she is prone to falling if she takes a rapid step or a sudden turn. She prefers to work slowly to avoid accidents, waking up early in the morning to get the meals ready for the family before they leave for school or work.
Her mother, who lives close by, gives her unending support. She provides her a constant supply of spice powders, chutneys and dosa batter. Even Jennifer’s kids help her in many ways. They hang out the laundry to dry, fetch stuff which may be heavy for her, and run small errands.
Since Jennifer’s home is now running smoothly she has started an online venture of her own to generate some income while working from home. She sells a variety of women’s clothing online through WhatsApp and Instagram. It adds to the family kitty while keeping her busy and engaged.
Her kids- God’s precious blessing
To ease her journey in life God has blessed Jennifer with two darling children. They understand their mother’s special condition and never make demands. She sometimes asks them whether they feel upset because she does not attend all the parent teacher meetings and other school functions. Their response is- She is their amma and they love her the way she is! They understand that money is low; so, they always seek permission before buying anything for themselves. They are also performing brilliantly at school- both in studies and in sports. If GNE Myopathy took away Jennifer’s confidence, her kids are returning it in full measure. Perhaps with their persuasion, she may shake off her inhibition and step out from home in due course to attend their school functions, especially sports’ day, which excites her the most. The school principal has got a special ramp made for Jennifer so that she does not have to negotiate steps to enter the school. And her son has offered to hold her hand and help her move around the school. She is slowly gathering strength to free herself from this self-imposed house arrest and own the world once again. Meeting other GNE Myopathy patients, even though virtually, has also been a source of positivity.
The disease is slowly making her physically weaker, but mentally she has been victorious. Her in-laws have not changed their attitude towards her, but she has no hard feelings for them anymore. Her only wish is that her children should not be victims of the same disease. She remembers the pain in her mother’s eyes and she does not want to feel that pain. All she wants from God is to keep her children happy and healthy forever.
Swati Thotla: Grappling with the twin challenge of disability and destitution
Swati grew up in the Suryapet district of Telengana. Having lost her father when she was barely thirteen, she was no stranger to hardship. Her sister had a mental disability, leaving her mother as the sole bread winner. Mother managed to bring up her two daughters by taking up a cooking and cleaning job in a women’s hostel. With meagre finances, she still made sure that Swati could continue with her education.
Swati was a physically active, confident and vivacious girl in high school. Her passion lay in music and dance, and she also got training in classical Carnatic music for some time. After passing high school in 2010, she joined local college to pursue B.Sc. She dreamt of earning well to ease her amma’s burden.
2012 - 2013: Onset of symptoms
While in college, while barely 17, Swati started finding difficulty in running and climbing stairs. She also had frequent falls. One day, while cycling to college she lost her balance and fell on the road. She had to be taken to hospital. As she narrated her frequent falling episodes to the doctor, he examined her but found nothing of concern. He attributed her weakness to general malnutrition and lack of iron.
2014 – 2015: Diagnosis at NIMS, Hyderabad
After graduating from college Swati took up a job in the customer service unit of Uninor sim company. It was a much-needed boost to the family finances, but all was not well with her health. She decided to visit a private hospital in Hyderabad for examination. Here the neurologist suspected a neuromuscular problem and she was correctly referred to see one of the leading experts, Dr. A.K. Meena, at the Nizam Institute of Medical Sciences (NIMS).
Negotiating the administrative maze at NIMS to get an appointment with Dr. Meena and get all the tests done, turned out to be an uphill task, partly because Hyderabad was about four hours bus journey from Suryapet. The tiring bus journey was followed by a long wait at the hospital. The OPD was very crowded, and sometimes Swati’s turn to see Dr. Meena would come at 9p.m.! But it was all worth the effort. Dr. Meena was the kind of doctor the medical profession is truly proud of. In spite of her busy OPD, she took time to understand each patient’s needs and gave due consideration. For Swati, she did not charge any consultation fees, and gave her personal phone number for Swati to make an appointment and avoid the long wait.
Clinicial examination by Dr. Meena showed that Swati did not have a neurological issue. A muscle biopsy was taken from Swati’s thigh for further testing. The biopsy showed her condition to be a muscle disorder. The exact diagnosis would need a DNA test, which Swati had to forgo because of the cost. Even without a DNA test Dr. Meena was quite certain that Swati’s condition was related to a progressively debilitating muscle-wasting disease that could make her severely disabled with time. There was no effective treatment for this set of diseases. As Dr. Meena began gently laying out the stark facts to Swati about her condition, her amma began to cry, and Swati herself slipped into a state of shock and confusion. Dr. Meena exhorted Swati to be brave and keep a positive frame of mind. She guided her about the benefit of regular physiotherapy, meditation and proper nutrition in slowing down muscle loss. She also assured Swati that active research was going on in this area, and she would call and inform Swati if any new treatment emerged.
2015-2018: The downhill journey
Swati’s disease progression has been more rapid than average for GNE Myopathy. Till 2015 she was walking stably and managing her life independently. Within a year, she could no longer walk without support, and was beginning to fall very frequently. Unable to use public transport, and without the resources to pay for private help, she could not retain her job beyond 2016. Her dream of becoming financially independent had to be abandoned.
Inherently Swati is a fighter. She found it hard to accept that there was no treatment for her condition. She desperately wanted to meet other patients of this disease to see if alternative therapies had worked for anyone. In 2018, she placed an advertisement in the newspaper describing her condition. Soon she got a response from the Telengana muscular dystrophy association. She went to Hyderabad to attend their meeting. Here, for the first time she met children suffering from Duchene Muscular Dystrophy and adults with Limb Girdle Muscular Dystrophy. From them she learnt about the stem-cell therapy, costing a couple of lakh Rupees, being offered by Dr. Alok Sharma in Mumbai.
Swati phoned Dr. Meena to get her advice about stem cell therapy. Dr. Meena categorically rejected the idea and strongly advised Swati not to go for this untested therapy and waste her time and money. But Swati was getting desperate. She decided to raise money and try out this treatment. She managed to contact Manchu Lakshmi Prasanna, daughter of the Telugu cinema super star, Mohan Babu, and sent her a video of her dire condition. Lakshmi is herself a film star and also hosts a TV show. Moved by Swati’s video she invited Swati to her TV show to talk about her story. This gave Swati the opportunity to raise the money she needed for stem cell therapy. Not heeding Dr. Meena’s advice, she showed up in Dr. Alok Sharma’s clinic for the therapy. Alas, not only was there no benefit, on hindsight Swati believes that it accelerated her decline (much like Abha’s experience).
2018 - 2019: Confirmed diagnosis of GNE Myopathy
When Swati informed Dr. Meena about the stem cell treatment she had taken, the otherwise placid Dr. Meena erupted in fury. She refused to have anything further to do with Swati and stopped taking her calls. However, the dedicated doctor that she was, she soon forgave her patient. Swati now had the money to get her DNA test done. Dr. Meena arranged for the test. Swati’s condition was confirmed to be GNE Myopathy. By itself the diagnosis was of little help. As of now there was no treatment for this rare disorder. But, Dr. Meena explained, that therapies, including gene therapy were being developed, and there was hope for the future. Meanwhile, the mantra to be followed was- adequate exercise, nutrition, and positivity.
With her muscles getting weaker by the day, and no immediate treatment avenue in sight, Swati felt engulfed in a wave of helplessness and depression. A silver lining appeared when in 2019, while searching you tube for GNE Myopathy, she saw the video of Shilpi describing her life’s journey (Shilpi is a GNE Myopathy patient, and trustee of WWGM). Swati left her phone number in the comments section, and soon she got a call from Shilpi. This was the first time she got introduced to other GNE Myopathy patients through a WhatsApp group. Knowing other people who were going through the same physical challenges, and had practical suggestions to offer had a calming effect. She began to gain some positivity.
2019 – 2025: Steadying the course
Financial insecurity was gnawing away at Swati. She had to think out-of-the box. The Telengana state elections were due in 2019. With nothing to lose, Swati took the bold step to seek an appointment with the local MLA. He had heard about her as she had written about her condition in newspapers. He agreed to see her in his office and promised to help her through the state government’s scheme for persons with disability. As a result, Swati was awarded a two-bedroom flat in Suryapet, along with a monthly disability pension of Rs. 4,000. This was a big relief for Swati and her family. But the pension amount was clearly insufficient for her daily needs. She needed to find a job that could be pursued from home.
In 2020 as the world was plunged into the covid-related lockdown, many on-line work avenues became popular. Swati is a very good singer, and now she started making money by singing popular Telugu and Hindi songs on the StarMaker app. Viewers could listen and watch the live-streaming of her songs. Soon she built a sizable fan base, many of whom paid her through the app. For the next five years Swati earned well and became financially stable. However, maintaining a loyal fan base meant singing almost continuously for 5-6 hours. Her neck had started getting weak and it was becoming difficult to sit for so long. Gradually her listeners began to dwindle, until it ceased being a source of revenue for her.
2026: Down but not out
Swati is now wheelchair bound and her dependency is going up. She needs to have a source of income to pay for caregiving and make ends meet. Her mind is abuzz with ideas about starting a small business from home. Given her disability and lack of capital, she is looking to partner with someone who shares her risk appetite, and can help with the running around. The road ahead is rocky but she is determined to work hard and achieve financial security.
In the face of adversity what keeps her going? “Self-motivation and complete faith in God”!
I apologize to all the other heroic women living with GNE Myopathy whose stories could not be covered this time. I salute and admire each one of them.
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