Amanda's MALS journey
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My name is Sandra Samay and my daughter Amanda Rumer and I, find ourselves in the position of relying on the kindness of family, friends and strangers. Amanda is 30 years old and for 13 + years she has struggled with multiple chronic illnesses. Exhausted, stressed and frustrated do not begin to explain the difficult journey and struggle we have faced. After years of suffering with horrible abdominal and back pain, and being told it was appendicitis, gallbladder, anxiety, depression, gastroparesis, hernia or IBS we have learned she has a very rare condition called nMALS. In MALS patients, the diaphragm is too low, causing the median arcuate ligament to compress the celiac artery. This compression also affects the nerves of the celiac ganglion, a bundle of sensory nerves located in the same area. The pressure on the artery may cause a change in blood flow, while the pressure on the nerves causes them to become inflamed. It is extremely painful and often misdiagnosed.
Over the last 5 years the condition has exacerbated. What used to be trips to the hospital every few months, now is every few weeks or days. In March she was hospitalized, then all procedures were postponed because of covid. She has also developed POTS and MCAS which we have learned are common comorbidities of MALS.
We have researched and consulted with multiple hospitals, physicians and other MALS patient's. Her Diagnosis has been confirmed by 2 surgeon's and her surgery date is November 4th. Over the next few weeks we need to raise money for her personal expenses as she is unable to work at this time, and has applied for disability.
We also need to prepare for expenses for the trip to Boston such as gas, hotels, food, medicine etc.
We are hoping her insurance will approve the procedure and will update as soon as we know. We understand this is a very difficult time to ask others to reach into your wallets when there have been so many layoffs, furloughs and businesses closing due to Covid 19.
We are most grateful and appreciate you taking the time to read about her condition. Any amount you can give is greatly appreciated.
Over the last 5 years the condition has exacerbated. What used to be trips to the hospital every few months, now is every few weeks or days. In March she was hospitalized, then all procedures were postponed because of covid. She has also developed POTS and MCAS which we have learned are common comorbidities of MALS.
We have researched and consulted with multiple hospitals, physicians and other MALS patient's. Her Diagnosis has been confirmed by 2 surgeon's and her surgery date is November 4th. Over the next few weeks we need to raise money for her personal expenses as she is unable to work at this time, and has applied for disability.
We also need to prepare for expenses for the trip to Boston such as gas, hotels, food, medicine etc.
We are hoping her insurance will approve the procedure and will update as soon as we know. We understand this is a very difficult time to ask others to reach into your wallets when there have been so many layoffs, furloughs and businesses closing due to Covid 19.
We are most grateful and appreciate you taking the time to read about her condition. Any amount you can give is greatly appreciated.
Organizer
Sandra Samay
Organizer
Strongsville, OH