Lily and frans fundraising
Donation protected
Hi we are Lily and Fran we both suffer from chronic illnesses and have decided to raise money towards 2 very important charities which mean a lot to us both.
We are rasing money towards the following charities:
• GIFT (non-profit organization which provides services to patients who suffer from digestive tract paralysis including Gastroparesis and Intestinal Failure
• EHLERS DANLOS UK (making our invisible visable)
The money will go towards medical research to diagnose and save lives for people fighting digestive disorders and fighting EHLERS DANLOS syndrome.
Why this means so much to you:
Lily- this would mean a lot to me as it took me nearly 2 years of pain, agony, vomiting, haematosis, malnourishment and more. I suffer from various conditions including ehlers danios syndrome, postural tachycardia syndrome, mast cell activation disoder, severe gastroparesis, severe gastrointestinal dysmotility, small intestinal hypomotikity, small intestine bacterial overgrowth, leaky gut syndrome and more. Gastroparesis/Dysmotility is a condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs. In the normal digestive system, liquefied food and secretions including digestive enzymes are pushed onwards by waves of muscular contraction. When these contractions are impaired, the contents are trapped, and cause distention with symptoms such as bloating, nausea, vomiting malnutrition and this disease can also become life threatening and in severe cases a digestive tract transplant may be needed. This awful disease meant I could no longer eat or drink so then needed an NG tube (a feeding tube into my stomach) as my condition worsened I then needed an NJ tube (a feeding tube into the small intestine), my condition then got so bad my whole digestive system completely shut down meaning I could no longer tolerate meaning I needed TPN (nutrition into my heart). I am now able to take tube feeds into my small intestine, but I needed surgery to have a long term feeding tube put into my jejenum and I also needed surgery to have a long term tube put into my stomach for drainage of acid and bile as my stomach can no longer digest that. I can no longer tolerate feeds into my small intestine and i'm on total parental nutrition, this is nutrition into my heart which is pretty much as dangerous as it sounds, we need a cure to stop all the people suffering from these rare, degenerative and life threatening conditions.
Fran-These charities mean a lot to me because in February 2016 after 1 year and half of suffering horrendous joint pains and having other heart problems and Gastro problems I was diagnosed with Ehlers Danlos syndrome type 3/hypermobile. Ehlers danlos is a genetic, connective tissue disorder effecting the collagen in your body. There are many different types vascular, hypermobile, classical and many more. It effects the joints, skin, GI system, heart, bladder and many more. There is no cure or treatment for EDS. EDS UK aim to educate the medical community, improve diagnosis, research and awareness. People with Ehlers Danlos are known as medical zebras as medical students are taught "when you hear the sound of hooves think horses not zebras" as zebra is used in reference to rare diseases. Getting a diagnosis can be very difficult and take many years as there is a lack of knowledge. I have many of the problems that come along with having EDS such as heart, GI, and joint problems meaning every day I suffer from pain, nausea, fatigue, dizziness and many more. I also have an extremely rare condition called SMA syndrome. (Superior mesenteric artery syndrome) where the SMA artery is compressing the duodenum creating a blockage. This causes pain, nausea, vomiting and much much more. Having these Gastro problems mean i am reliant on tube feeding through my jejunum. I also have a feeding tube into my stomach to drain it. I take many medications a day including injections. It would mean a lot if you could donate to help other people in a similar situation!
How thankful you will be
GPACT charity-We would be both really thankful for this as more research into this condition could mean a cure without having to have a transplant and would mean we would be a step close to been able to eat and drink like any other normal teenager can. This would also mean we wouldn’t have to take over 30 medications a day to keep our symptoms settled and would also mean we wouldn’t need tubes in our bodies to give us nutrition which have a lot of risks to them like infection. We also wouldn’t have to be connected to a machine for 24 hours a day, so we would be very thankful if you could donate to this charity
EHLERS DANLOS UK charity- we would both be really thankful if you could donate to this charity as it helps raise awareness and helps people get research and a diagnosis. It could also help a cure be found as a cure or treatment has currently not been found for this awful worsening condition. A cure could allow people to live a pain free life and could give people a longer life and an easier life.
we aren't asking for big donations whether its 20p we are still very grateful.
We are rasing money towards the following charities:
• GIFT (non-profit organization which provides services to patients who suffer from digestive tract paralysis including Gastroparesis and Intestinal Failure
• EHLERS DANLOS UK (making our invisible visable)
The money will go towards medical research to diagnose and save lives for people fighting digestive disorders and fighting EHLERS DANLOS syndrome.
Why this means so much to you:
Lily- this would mean a lot to me as it took me nearly 2 years of pain, agony, vomiting, haematosis, malnourishment and more. I suffer from various conditions including ehlers danios syndrome, postural tachycardia syndrome, mast cell activation disoder, severe gastroparesis, severe gastrointestinal dysmotility, small intestinal hypomotikity, small intestine bacterial overgrowth, leaky gut syndrome and more. Gastroparesis/Dysmotility is a condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occurs. In the normal digestive system, liquefied food and secretions including digestive enzymes are pushed onwards by waves of muscular contraction. When these contractions are impaired, the contents are trapped, and cause distention with symptoms such as bloating, nausea, vomiting malnutrition and this disease can also become life threatening and in severe cases a digestive tract transplant may be needed. This awful disease meant I could no longer eat or drink so then needed an NG tube (a feeding tube into my stomach) as my condition worsened I then needed an NJ tube (a feeding tube into the small intestine), my condition then got so bad my whole digestive system completely shut down meaning I could no longer tolerate meaning I needed TPN (nutrition into my heart). I am now able to take tube feeds into my small intestine, but I needed surgery to have a long term feeding tube put into my jejenum and I also needed surgery to have a long term tube put into my stomach for drainage of acid and bile as my stomach can no longer digest that. I can no longer tolerate feeds into my small intestine and i'm on total parental nutrition, this is nutrition into my heart which is pretty much as dangerous as it sounds, we need a cure to stop all the people suffering from these rare, degenerative and life threatening conditions.
Fran-These charities mean a lot to me because in February 2016 after 1 year and half of suffering horrendous joint pains and having other heart problems and Gastro problems I was diagnosed with Ehlers Danlos syndrome type 3/hypermobile. Ehlers danlos is a genetic, connective tissue disorder effecting the collagen in your body. There are many different types vascular, hypermobile, classical and many more. It effects the joints, skin, GI system, heart, bladder and many more. There is no cure or treatment for EDS. EDS UK aim to educate the medical community, improve diagnosis, research and awareness. People with Ehlers Danlos are known as medical zebras as medical students are taught "when you hear the sound of hooves think horses not zebras" as zebra is used in reference to rare diseases. Getting a diagnosis can be very difficult and take many years as there is a lack of knowledge. I have many of the problems that come along with having EDS such as heart, GI, and joint problems meaning every day I suffer from pain, nausea, fatigue, dizziness and many more. I also have an extremely rare condition called SMA syndrome. (Superior mesenteric artery syndrome) where the SMA artery is compressing the duodenum creating a blockage. This causes pain, nausea, vomiting and much much more. Having these Gastro problems mean i am reliant on tube feeding through my jejunum. I also have a feeding tube into my stomach to drain it. I take many medications a day including injections. It would mean a lot if you could donate to help other people in a similar situation!
How thankful you will be
GPACT charity-We would be both really thankful for this as more research into this condition could mean a cure without having to have a transplant and would mean we would be a step close to been able to eat and drink like any other normal teenager can. This would also mean we wouldn’t have to take over 30 medications a day to keep our symptoms settled and would also mean we wouldn’t need tubes in our bodies to give us nutrition which have a lot of risks to them like infection. We also wouldn’t have to be connected to a machine for 24 hours a day, so we would be very thankful if you could donate to this charity
EHLERS DANLOS UK charity- we would both be really thankful if you could donate to this charity as it helps raise awareness and helps people get research and a diagnosis. It could also help a cure be found as a cure or treatment has currently not been found for this awful worsening condition. A cure could allow people to live a pain free life and could give people a longer life and an easier life.
we aren't asking for big donations whether its 20p we are still very grateful.
Organizer
LILY FRAN
Organizer
