For my best friend Jemma (GIFT & EDS UK funding)
Donation protected
Turning 30 is a huge milestone and when I was thinking about what I wanted, nothing material came close to the desire I have to raise awareness and fund research for a charity needing funds for a subset of her illness.
My best friend Jemma has been in my life since I was two years old. We've gone through everything together from nursery school to walking down the aisle as a bridesmaid at her wedding. She's not just my best friend, I consider her family.
Age 12 for one year she had agonising stomach issues, she was in and out of hospital constantly and pretty much missed the first year of secondary school. She was diagnosed with gastric dysmotility - a stomach that didn’t empty and intestines that simply don’t work. Throughout our teenage years off and on she had illnesses, surgeries, pain but she accepted she was simply unlucky and her body was just ‘a bit broken’.
Her journey became particularly difficult when very soon after starting University, she was experiencing excruciating pain in her shoulder and had to endure 7 keyhole surgeries, subsequently meaning she couldn't continue at University and had to drop out. A particularly difficult blow when she had done nothing but achieve A grades throughout her entire schooling career.
What followed was a difficult year of pain and missing out of ‘normal’ teenage life. But again no indication of why her body was so wrong.
In true Jemma style, she refused to give up, she enrolled at the Open University to study Psychology and despite her struggles achieved a first class honours. She then went on to be one of only 8 people chosen in the country to do her PHD at UCL.
After completing her PHD and specialising in Autism, her symptoms significantly worsened, so much so that she couldn't get to work regularly. It was only as she got so sick that she was vomiting 20 times daily that she was given her diagnosis.
She has Ehlers-Danlos Syndrome, an illness that comes in many forms, with wildly varying levels of severity and is a gateway to a number of more serious conditions. It effectively affects the connective tissue in the body which we pretty much rely on to function. For Jemma her EDS is so bad that it affects everything from her joints to her skin.
As a consequence of the severity of her syndrome she developed Gastroparesis, a disease in which the stomach cannot empty itself. Her stomach is paralysed. Her entire digestive system is paralysed. She gets her nutrition through a tube that feeds directly into her intestines, she cannot eat any solid food and even a small drink of water can cause agonising pain and nausea.
For a year the tube was through her nose and whilst it is better visually that it is direct into her intestines, the issue remains the same - she has to be tied to a feeding pump machine for 22 hours a day. Despite this she is still sick constantly and spends her life battling feeling and being sick. She is incredibly weak as a result and needs constant supervision and care.
The doctors have said there is nothing more they can do. This is it. All treatment options have been tried and she will have to live like this forever. She is in intestinal failure and it is only a case of managing her symptoms as best they can.
Unless new research yields more options.
As best friends we rely on each other to work through each other's problems and come up with practical solutions to help one another. I haven't been able to do anything to lessen her pain and suffering which is something that haunts me daily. This is why I want to raise money for this cause so she can have hope that someone somewhere is working to improve her situation and her entire future doesn't have to look like this.
Despite being incredibly sick, she is fighting to keep her identity. Although getting out of bed alone is a huge task, she remains ambitious, kind, loving, hilarious and all the things you could wish for in a best friend. She's more than shown that she's capable of anything in the world and I believe despite all of this, she will find a way to continue to help more families and children in need of her incredible skillset.
Jemma is blessed to have an unwaveringly supportive husband and incredible family who look after her but not everyone is as lucky and battling through these struggles without their help would be close to impossible, but there are people out there that have no other choice.
All I wish for, for my birthday is to give her hope and let her know her daily epic struggles could improve in some way. She's an exceptional human being who has given me so much bravery and helped me overcome so many hurdles by her examples of fearlessness, I'd very much like people to acknowledge that this is chronic, this is real and most would never be able to put up the fight she does daily.
Please donate and help these two charities find solutions to manage these illnesses and lessen patients struggles if not one day find a cure. They aren't well funded and every single penny counts!
ALL PROCEEDS GO TO GIFT - GASTROPARESIS & INTESTINAL FAILURE SUPPORT & EHLERS-DANLOS SUPPORT UK
My best friend Jemma has been in my life since I was two years old. We've gone through everything together from nursery school to walking down the aisle as a bridesmaid at her wedding. She's not just my best friend, I consider her family.
Age 12 for one year she had agonising stomach issues, she was in and out of hospital constantly and pretty much missed the first year of secondary school. She was diagnosed with gastric dysmotility - a stomach that didn’t empty and intestines that simply don’t work. Throughout our teenage years off and on she had illnesses, surgeries, pain but she accepted she was simply unlucky and her body was just ‘a bit broken’.
Her journey became particularly difficult when very soon after starting University, she was experiencing excruciating pain in her shoulder and had to endure 7 keyhole surgeries, subsequently meaning she couldn't continue at University and had to drop out. A particularly difficult blow when she had done nothing but achieve A grades throughout her entire schooling career.
What followed was a difficult year of pain and missing out of ‘normal’ teenage life. But again no indication of why her body was so wrong.
In true Jemma style, she refused to give up, she enrolled at the Open University to study Psychology and despite her struggles achieved a first class honours. She then went on to be one of only 8 people chosen in the country to do her PHD at UCL.
After completing her PHD and specialising in Autism, her symptoms significantly worsened, so much so that she couldn't get to work regularly. It was only as she got so sick that she was vomiting 20 times daily that she was given her diagnosis.
She has Ehlers-Danlos Syndrome, an illness that comes in many forms, with wildly varying levels of severity and is a gateway to a number of more serious conditions. It effectively affects the connective tissue in the body which we pretty much rely on to function. For Jemma her EDS is so bad that it affects everything from her joints to her skin.
As a consequence of the severity of her syndrome she developed Gastroparesis, a disease in which the stomach cannot empty itself. Her stomach is paralysed. Her entire digestive system is paralysed. She gets her nutrition through a tube that feeds directly into her intestines, she cannot eat any solid food and even a small drink of water can cause agonising pain and nausea.
For a year the tube was through her nose and whilst it is better visually that it is direct into her intestines, the issue remains the same - she has to be tied to a feeding pump machine for 22 hours a day. Despite this she is still sick constantly and spends her life battling feeling and being sick. She is incredibly weak as a result and needs constant supervision and care.
The doctors have said there is nothing more they can do. This is it. All treatment options have been tried and she will have to live like this forever. She is in intestinal failure and it is only a case of managing her symptoms as best they can.
Unless new research yields more options.
As best friends we rely on each other to work through each other's problems and come up with practical solutions to help one another. I haven't been able to do anything to lessen her pain and suffering which is something that haunts me daily. This is why I want to raise money for this cause so she can have hope that someone somewhere is working to improve her situation and her entire future doesn't have to look like this.
Despite being incredibly sick, she is fighting to keep her identity. Although getting out of bed alone is a huge task, she remains ambitious, kind, loving, hilarious and all the things you could wish for in a best friend. She's more than shown that she's capable of anything in the world and I believe despite all of this, she will find a way to continue to help more families and children in need of her incredible skillset.
Jemma is blessed to have an unwaveringly supportive husband and incredible family who look after her but not everyone is as lucky and battling through these struggles without their help would be close to impossible, but there are people out there that have no other choice.
All I wish for, for my birthday is to give her hope and let her know her daily epic struggles could improve in some way. She's an exceptional human being who has given me so much bravery and helped me overcome so many hurdles by her examples of fearlessness, I'd very much like people to acknowledge that this is chronic, this is real and most would never be able to put up the fight she does daily.
Please donate and help these two charities find solutions to manage these illnesses and lessen patients struggles if not one day find a cure. They aren't well funded and every single penny counts!
ALL PROCEEDS GO TO GIFT - GASTROPARESIS & INTESTINAL FAILURE SUPPORT & EHLERS-DANLOS SUPPORT UK
Organizer
Claudia Green
Organizer
