Help Emma & Her Dilemma! ✌
Donation protected
Hi guys!
My name is Nick and I'm here to tell you the story of my sister, Emma.
At the age of fifteen Emma underwent scoliosis corrective spinal surgery which straightened her spine from an "S" shape to a normal, more lengthened position. As each year has passed, Emma has developed more and more health problems as a result of this corrective surgery.
Some of the health problems she experiences include kidney and urine infections, constant nausea, chronic fatigue, fibromyalgia, POTS, cealiacs disease, heart palpitations, pain in her back and veins to name but a few. Last year Emma was diagnosed with Elhers Danlos Syndrome (EDS) which we now know caused her scoliosis to develop. As the years have passed, she has continuously struggled with her digestive system/intestinal problems and she has tried many dietary changes to combat these symptoms. Whilst some of these dietary changes helped initially, her ability and tolerance to cope with food has further deteriorated.
Her abdominal pain has become so problematic due to the fact it causes nausea, fainting, vomiting and abdominal brutt/palpitations in the stomach. The fundamental issue Emma now has is that her digestive system is almost at the point where it cannot tolerate food entirely. Even when eating the smallest amounts of food, this can cause pain, diarrhea and sickness. She has tried various dietary hospital drinks alongside her dietician but to no avail.
After suffering from significant weight lost, Emma was hospitalised in August 2016. It was at this point that Emma was put on a new hospital food-drink called Elemental Extra. The difference between this and previous hospital drinks is that Elemental Extra is completely pre-digested. Once drunk, this is absorbed straight into the blood stream taking pressure off the digestive system. She is now drinking 5-10 of these daily and has managed to regain weight, however is relying solely on them for her nutritional support. If Emma eats out or at home, then as a consequence she becomes severely ill afterwards - food is ingested however not absorbed and irritates her whole digestive system.
Life is very limited for Emma right now. The more Emma does physically, the more she suffers. She is unable to work, socialise and even get out of bed sometimes. Most of her days are spent in bed and when she is brave enough to venture outside of home, the following few days are a nightmare and she pays the consequences massively.
Apart from these drinks, medical professionals in the UK were unsure as to how they could further help Emma. It was at this point when me and my family decided to take matters into our own hands and begin looking for answers to Emma’s symptoms elsewhere. Just before Christmas we stumbled across a possible syndrome which matched a lot of Emma’s problems and we needed to rule it in or out. Unfortunately, the NHS were not able to help with this due to a lack of knowledge within the UK. In turn, our research led us to someone based in Germany who specifically deals with these syndromes and as a result, we recently flew out to see him.
The trip was a success. After undergoing a color-doppler ultrasound, Emma was diagnosed with 4 artery compressions, these being Nutcracker Syndrome, Cealiac Artery Compression Syndrome, May-Thurner Constellation and Pelvic Congestion Syndrome. Professor Scholbach explained that Emma’s previous corrective scoliosis surgery has resulted in these compressions. He also explained that whilst surgery is a possible route to go down, many operations do not address the problem properly due to a lack of understanding surrounding vascular compressions. He discussed two possible operations that could alleviate Emma’s digestive disorders and vascular pain, however strongly advised that the best procedure could be done in Germany due to their greater levels of understanding.
Professor Scholbachs recommended plan of action involved taking an eight week course of aspirin, which helps thin the blood and possibly alleviate some of the compression pain. He advised her to keep a record of her pain level during this period and to return back to Germany to see him once again, where upon he would re-evaluate symptoms with another ultrasound and discuss the two possible operations.
Now on to our fundraising target. To give you a breakdown with regards to pricing, our trip out to Germany in mid-December cost around £1,500. This essentially covered flights for three, a train, shuttle bus, hotel, taxis and the consultant examination. Realistically we will probably need to do two more trips like this to see Professor Scholbach and possibly stay longer. If surgery is required this will of course be the most substantial cost, with two operations and two consultations (with separate surgeons!) prior to the surgery. Time spent in Germany will be difficult to predict as post-op recovery will be unknown, however we have done our best to calculate an accurate total.
Looking past the operations, we are praying that Emma can go back to a solid, sustainable diet whilst alleviating her many painful stomach symptoms.
On a final note, me and my family would like to say thank you for reading and to anyone who is willing to contribute to our cause. We are extremely grateful. We understand that whilst our target is high and will be very difficult to obtain, our overall costs are likely to exceed this. If on the slim chance that there is any money left over, we will donate the excess to causes raising awareness of these rare compression syndromes.
My name is Nick and I'm here to tell you the story of my sister, Emma.
At the age of fifteen Emma underwent scoliosis corrective spinal surgery which straightened her spine from an "S" shape to a normal, more lengthened position. As each year has passed, Emma has developed more and more health problems as a result of this corrective surgery.
Some of the health problems she experiences include kidney and urine infections, constant nausea, chronic fatigue, fibromyalgia, POTS, cealiacs disease, heart palpitations, pain in her back and veins to name but a few. Last year Emma was diagnosed with Elhers Danlos Syndrome (EDS) which we now know caused her scoliosis to develop. As the years have passed, she has continuously struggled with her digestive system/intestinal problems and she has tried many dietary changes to combat these symptoms. Whilst some of these dietary changes helped initially, her ability and tolerance to cope with food has further deteriorated.
Her abdominal pain has become so problematic due to the fact it causes nausea, fainting, vomiting and abdominal brutt/palpitations in the stomach. The fundamental issue Emma now has is that her digestive system is almost at the point where it cannot tolerate food entirely. Even when eating the smallest amounts of food, this can cause pain, diarrhea and sickness. She has tried various dietary hospital drinks alongside her dietician but to no avail.
After suffering from significant weight lost, Emma was hospitalised in August 2016. It was at this point that Emma was put on a new hospital food-drink called Elemental Extra. The difference between this and previous hospital drinks is that Elemental Extra is completely pre-digested. Once drunk, this is absorbed straight into the blood stream taking pressure off the digestive system. She is now drinking 5-10 of these daily and has managed to regain weight, however is relying solely on them for her nutritional support. If Emma eats out or at home, then as a consequence she becomes severely ill afterwards - food is ingested however not absorbed and irritates her whole digestive system.
Life is very limited for Emma right now. The more Emma does physically, the more she suffers. She is unable to work, socialise and even get out of bed sometimes. Most of her days are spent in bed and when she is brave enough to venture outside of home, the following few days are a nightmare and she pays the consequences massively.
Apart from these drinks, medical professionals in the UK were unsure as to how they could further help Emma. It was at this point when me and my family decided to take matters into our own hands and begin looking for answers to Emma’s symptoms elsewhere. Just before Christmas we stumbled across a possible syndrome which matched a lot of Emma’s problems and we needed to rule it in or out. Unfortunately, the NHS were not able to help with this due to a lack of knowledge within the UK. In turn, our research led us to someone based in Germany who specifically deals with these syndromes and as a result, we recently flew out to see him.
The trip was a success. After undergoing a color-doppler ultrasound, Emma was diagnosed with 4 artery compressions, these being Nutcracker Syndrome, Cealiac Artery Compression Syndrome, May-Thurner Constellation and Pelvic Congestion Syndrome. Professor Scholbach explained that Emma’s previous corrective scoliosis surgery has resulted in these compressions. He also explained that whilst surgery is a possible route to go down, many operations do not address the problem properly due to a lack of understanding surrounding vascular compressions. He discussed two possible operations that could alleviate Emma’s digestive disorders and vascular pain, however strongly advised that the best procedure could be done in Germany due to their greater levels of understanding.
Professor Scholbachs recommended plan of action involved taking an eight week course of aspirin, which helps thin the blood and possibly alleviate some of the compression pain. He advised her to keep a record of her pain level during this period and to return back to Germany to see him once again, where upon he would re-evaluate symptoms with another ultrasound and discuss the two possible operations.
Now on to our fundraising target. To give you a breakdown with regards to pricing, our trip out to Germany in mid-December cost around £1,500. This essentially covered flights for three, a train, shuttle bus, hotel, taxis and the consultant examination. Realistically we will probably need to do two more trips like this to see Professor Scholbach and possibly stay longer. If surgery is required this will of course be the most substantial cost, with two operations and two consultations (with separate surgeons!) prior to the surgery. Time spent in Germany will be difficult to predict as post-op recovery will be unknown, however we have done our best to calculate an accurate total.
Looking past the operations, we are praying that Emma can go back to a solid, sustainable diet whilst alleviating her many painful stomach symptoms.
On a final note, me and my family would like to say thank you for reading and to anyone who is willing to contribute to our cause. We are extremely grateful. We understand that whilst our target is high and will be very difficult to obtain, our overall costs are likely to exceed this. If on the slim chance that there is any money left over, we will donate the excess to causes raising awareness of these rare compression syndromes.
Organizer
Emma Green
Organizer
