Collecting Stories of Hope
I am writing an article and I'm calling it, "Stories of Hope." Since a lot of people have been recently diagnosed and are struggling, I wanted to give them hope by posting different people's stories that they might relate to, and realize they can fight Gastroparesis, and they can still have some sort of life, though they might not ever have the same one they had before GP. I want people’s different views, since Gastroparesis is different for all of us, so that other people could relate to the book I’m writing a bit more. I want to share ups and downs, but also to motivate people and let them know they’re not alone. That’s the most important thing to me. I want to dedicate a chapter of this in my book.
I started collecting "Stories of Hope" years ago, and I have them on my website if you want to take a look at a sample and see if that helps you: http://emily-scherer.squarespace.com/gp-stories/.
You can also find out more information here: http://www.emilysstomach.com/2018/07/collecting-stories-of-hope-andor.html
If you would like to include a picture, you are more than welcomed to!
I would also like to post these in my blog, in addition to writing a book.
My blog reaches thousands of people, and if anyone can relate and it helps them to keep fighting, I think that would be a positive thing and most importantly, you can help someone else. You never know who you might touch or help! I would really appreciate it.
I could use your first name and last initial, or I can make up a name for you, for privacy reasons. If you are interested in participating, please email your story to me at: firstname.lastname@example.org.
You can also message my page, Gastroparesis - Emily's Stomach.
I feel like the people sharing their Stories of Hope are really Gastroparesis heroes and should be known and encouraged, because they help so many.
To those of you who have sent stories already, thank you for being brave and selfless.
Progressional Timeline Request
In May of 2013, I asked you guys to send me progressional timelines, which some of you did. First, let me explain what it is.
A progressional timeline that I'm looking for includes sequential years for - what happened right before you got sick, when you got sick, doctors visits and what they told you, any pain specialists, testings, test results, and your symptoms when you first got sick and symptoms before and now. Also, what do you think caused it? Include that in your timeline, too.
In addition to that, please write the dates for when you discovered other medical conditions before and after Gastroparesis. Please include whether you still have your gallbladder and/or appendix. If you no longer have your gallbladder and/or appendix, please put the date/year that you had it/them taken out.
Were you diagnosed with Gastroparesis after your gallbladder was removed? Where you diagnosed after your appendix was removed? When were you diagnosed with EDS or Dysautonomia or both? Do you have all three, including Gastroparesis? Have you been diagnosed with more autoimmune illnesses once you were diagnosed with the first one? Do you have lupus or any other autoimmune illnesses? Please include those in your timeline, too.
I want to compare this to other people's progressive timelines. My goal is to find a common link between all of us and our Gastroparesis and maybe it might shed some light on why we are diagnosed with other chronic illnesses. I know it will not be exactly scientific, but it IS a start and everyone has to start somewhere.
Additionally, I can post results anonymously. If you wish to remain anonymous, just please let me know in the email that you send. I will ALWAYS respect your privacy.
Writing GP Book & Need Your Help
So, I have been debating on whether or not to write a GP book for a long time. The reason I haven't done it yet is that I remember what it's like not to have health insurance and having to choose between the doctor and meds for the month or rent. Most of the pertinent information, I put online for free in my blog. Anyway, I haven't started writing because I wanted to have my outline down first.
I don't believe in profiting off of sick people. If this book does sell well, and that's a shot in the dark, I don't need the money so I could send it to a foundation I trust. That's if it sells well. If it does, maybe I can start a 501(c)3 in Atlanta, and expand across GA to help people to get to doctor's appts, fight with their ins companies for them, help them get assistance or something like that. But, if it went to a great cause, like helping others in the community find rides cheaply or at no cost to them, people who could help with insurance hangups, someone to fight for you with your doctor, I mean, I've got a lot of ideas.
I have a new group, the first of its kind, that I think you guys might be interested in joining. It's just for fun. My admins and I came up with the idea of a group (my original idea was a twitter account) but I think a group works better.
If you need a laugh or want to post your own #GPFail for others to see, this is the group for you! I laugh at myself a lot because I have done a lot of GP Fails.
For example, tonight as I was taking my nighttime meds, I dropped one of my pills and it landed in the can of ginger ale I had been sipping on. I had to CHUG the can quickly. before it dissolved. Ew! lol
See, it's things like that! I think it's a wonderful idea, no other groups have this, and I think it would be a great way to blow off some steam but laugh at the same time! Come and join us!
Vanda’s PhII Data Offer Hope for Gastroparesis Patients Who Have Seen No New Treatments in Decades
by endpoints staff — on December 4, 2018 07:06 AM EST
Updated: 07:17 AM
As one of the handful of drugs-in-development for gastroparesis, Vanda Pharmaceuticals’ $VNDA tradipitant has set itself apart for the condition that affects about 6 million in the United States and has not seen an approval in nearly four decades. On Monday, the drugmaker released mid-stage data that impressed, showing the drug conferred a statistically significant improvement in nausea symptoms and nausea-free days.
Gastroparesis is a chronic condition with few treatment options that affects the normal spontaneous movement of the muscles in the stomach, which usually propel food through the digestive tract. In patients afflicted with the condition, these muscles work poorly or not at all, delaying or preventing the stomach from emptying, causing nausea, vomiting and issues with blood sugar levels and nutrition. The etiology of gastroparesis is unclear, but the condition sometimes presents as a complication of diabetes or surgery. The one FDA-approved drug specifically sanctioned for use in gastroparesis is metoclopramide, which carries a black box warning that cautions against prescribing for longer than 12 weeks.
Vanda’s drug, a neurokinin-1 receptor (NK-1R) antagonist that was licensed from Lilly $LLY in 2012, was tested against a placebo in idiopathic and diabetic gastroparesis patients in the month long Phase II study. The drug met the main goal, as well as a number of key secondary endpoints, and was well tolerated with a safety profile similar to that of the placebo.
“Tradipitant could offer a much more tolerable, chronic treatment, and given the paucity of programs in development for this indication (we count ~4 others), we believe this asset could garner interest form potential partners. We think this point will become a debate among investors on whether VNDA should partner this program based on the Phase 2 data or proceed into Phase 3, with the latter being the strategy currently being pursued by the company,” Stifel analysts wrote in a note.
The trial hit the primary endpoint of nausea improvement as measured by patient diaries that rated their symptoms on a 0-5 scale. Patients on tradipitant reported a drop of 1.2 versus a fall of 0.7 on placebo (p=0.0099). For nausea-free days, another critical endpoint, tradipitant brought about a roughly 29% increase, compared to about 15% for patients receiving placebo. Improvements were also seen in most of the core gastroparesis symptoms including vomiting, bloating, and fullness after meals — most effects were apparent by the second week of treatment although improvements continued through the fourth and last week of treatment in the tradipitant group, the company reported.
“Based on our previous KOL checks, a ≥1 improvement on nausea and ≥20% improvement on nausea free days was viewed as clinically meaningful, and we believe tradipitant has met this hurdle in the more severe patients, which made up the majority of the study population. Importantly, there were improvements/no worsening on the other core symptoms of gastroparesis, which is important from an FDA perspective based on the agency’s 2015 draft guidance,” Stifel analysts added.
Tradipitant is expected to rake in peak sales of 898 million, estimated Jefferies analysts. Meanwhile, analysts at Stifel said they had raised their peak sales expectations from $535 million to $800 million, noting that their updated forecast could still be conservative, “given the size of the market and the fact over ~3-4 million scripts are written each year for metoclopramide”.
The drug is currently also being tested in a late-stage study in atopic dermatitis associated chronic pruritus, after a mid-stage study yielded mixed data in the condition.
This was taken from the Alabama News: http://www.al.com/news/birmingham/index.ssf/2014/10/alabaster_woman_undergoes_late.html
Alabaster woman undergoes latest surgery to treat 'paralyzed stomach' symptoms
By Martin J. Reed | email@example.com
Email the author | Follow on Twitter
on October 31, 2014 at 11:44 AM, updated October 31, 2014 at 11:59 AM
ALABASTER, Alabama -- Since 2007, Kirsten Steele of the Alabaster area has been tortured by gastrointestinal tract problems that have caused routine vomiting and resulted in a feeding tube and multiple surgical procedures.
Steele, who's 38 and a former billing director for a healthcare provider, suffers from a rare condition known as gastroparesis, which she describes as "a paralyzed stomach."
"When you eat, your stomach breaks all that food down. But what happens with gastroparesis is that food sits in that stomach and basically rots. There's no way to get it out," she said. "You get full really quickly -- the bloating because of all the gases and everything, the fermented food. It can cause bacteria overgrowth."
It has also caused regular vomiting because her body can't digest what she consumed. "It's very debilitating," said Steele, who's been on a feeding tube since November 2012.
She had weighed more than 300 pounds in 2007, but lost about 140 pounds after undergoing gastric bypass surgery in May 2011 that doctors thought may relieve her condition. The surgery and other procedures have not worked.
"I look fairly healthy, but if you look at my labs or insides, I'm malnourished," she said, referring to her medical tests. "You go from being someone who worked 50-plus hours a week to having to be at home and depending on others. That's extremely difficult."
She is trying to raise awareness about issues surrounding gastroparesis and educating others who have similar symptoms. "I want people to know about this. I want people to reach out to others who are dealing with this," she said.
Steele has a variety of personal websites to draw attention to her condition: aYouCaring Site to solicit donations for her medical care; her Caring Bridge Blog; and her Keep Kirsten Kicking Facebook page.
Steele is recovering from a surgical procedure she underwent Wednesday morning at the Cleveland Clinic, which specializes in digestive diseases, that doctors hope will vastly improve her condition.
"This is going to be a reconstruction," Steele said in a phone interview prior to the procedure. "We really don't know exactly (what will happen) until he gets in there to determine what he's going to do."
She anticipated part of the procedure would repair the connection of her esophagus and small intestine that had been altered by a past surgery. If the procedure doesn't work as well as planned, she would likely be placed on a list for a three-part gastric transplant of her stomach, intestine and pancreas.
Her journey to reach the Cleveland Clinic has not been an easy one.
"It was probably about 2007 I was having issues with a lot of vomiting. I was overweight at the time. The vomiting was blamed on everything else, so every time I would go to the GI (gastrointestinal doctor), they would say I was lactose intolerant or gluten intolerant," she said. "Then they found my gall bladder was diseased and they removed it. Things didn't really get much better."
Her sickness continued over the years and an endoscopy in 2010 showed her digestive system was not working. "I still had food that was undigested for 12 hours before," she said.
Doctors prescribed her Reglan to aid in her digestion, which improved, but she went ahead and had a gastric bypass procedure in May 2011. "There are studies that show having a bypass can also be used to treat gastroparesis," she said.
The bypass worked for her weight loss, but her sickness persisted. "The year after the bypass, I had a lot of issues with throwing up still," she said. "Every time I would mention it to the doctor, they told me, 'You need to take slower bites or eat slower.' It was always, 'Do something different.'"
She recalled waking up one morning in June 2012 unable to eat or drink anything because nothing would stay in her stomach. Doctors found part of her digestive system packed with undigested food.
"That's when I got the official gastroparesis diagnosis," she said. "In October 2012, they removed the stomach pouch and attached the esophagus directly to the small intestine. ... It went downhill from there."
Her sickness did not subside and a battery of medical procedures failed to work, prompting doctors to attach a feeding tube to her in late 2012. Testing in 2013 by the Mayo Clinic showed her problems were not confined to her stomach.
"Even now, if I take a try to eat, I regurgitate everything. There's no effort. It comes back up. That changes so much for you," she said. "The Mayo Clinic said there weren't any treatment options available because I had two surgeries. Basically my best hope was for good symptom management."
One of her doctors a couple of months ago referred her to the Cleveland Clinic, which is one of the few places in the United States that performs the type of transplant she may need. She had her first appointment there on Oct. 13, and doctors originally planned a surgery for her Dec. 17.
Just over a week later, the hospital called and made her surgery a priority. "Really it's 50-50 if it's going to help. You get to a point where it doesn't matter. You feel so bad you're willing to try whatever it's going to take just to improve your quality of life," she said.
She'll probably remain in the hospital for several days and need to stay in the Cleveland area for a couple of weeks following surgery.
"I think it's just all in your attitude in keeping it going. You really just have to decide what you're going to do. Are you going to fight it and make the best of it? Or are you just going to have a pity party? I can't have a pity party. That's just not me. I don't give up too easily that's for sure. It's been a long journey," she said.
This is a brand new facility that are helping GP patients, taken from the Cleveland Clinic: http://my.clevelandclinic.org/health/diseases_conditions/gastroparesis-overview
Gastroparesis, also called delayed gastric emptying, is a disorder in which the stomach takes too long to empty its contents. It often occurs in people with type 1 diabetes or type 2 diabetes.
Gastroparesis happens when nerves to the stomach are damaged or stop working. The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.
Diabetes can damage the vagus nerve if blood glucose levels remain high over a long period of time. High blood glucose causes chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves.
Signs and symptoms of gastroparesis are:
vomiting of undigested food
an early feeling of fullness when eating
erratic blood glucose levels
lack of appetite
spasms of the stomach wall
These symptoms may be mild or severe, depending on the person.
Gastroparesis is most often caused by:
surgery on the stomach or vagus nerve
medications, particularly anticholinergics and narcotics (drugs that slow contractions in the intestine)
gastroesophageal reflux disease (rarely)
smooth muscle disorders such as amyloidosis and scleroderma
nervous system diseases, including abdominal migraine and Parkinsons disease
metabolic disorders, including hypothyroidism
Because blockage of the stomach or small bowel can produce the same symptoms as gastroparesis, an endoscopy or x-ray study must be performed initially. If there is no blockage, the following tests can be conducted:
Gastric emptying study: measures how quickly an egg sandwich is emptied from the stomach
Manometry: measures the strength of stomach contractions
Electrogastrogram: a diagnostic test for patients with unexplained nausea and vomiting. The test consists of placement of electrodes on the skin of the abdomen, and recording the electrical activity of the stomach, much like an EKG. The test is done on an empty stomach followed by a liquid meal and lasts approximately 1 hour
Special diet, avoiding those foods that are difficult for the stomach to empty.
Drugs that make the stomach muscle contract more strongly.
Tubes inserted into the small bowel so that liquid food can be given, and sometimes inserting tubes in the stomach to help empty secretions and air.
Gastric Neurostimulator (“Pacemaker”): The latest treatment involves implantation of a device in the abdominal wall, with electrodes sutured to the stomach. This new treatment is offered at the Cleveland Clinic and the “pacemaker” can be inserted laparoscopically. The Cleveland Clinic is among the few centers in the United States to implant this device laparoscopically. For additional information on this therapy, please visit the manufacturers Web site.
Surgery: In selective situations, surgery with removal of most of the stomach may need to be performed.
This was taken from John Hopkin's Medicine in 2013: http://www.hopkinsmedicine.org/news/publications/inside_tract/inside_tract_summer_2013/gastroparesis_looking_at_a_breakthrough
Gastroparesis: Looking at a Breakthrough
Date: July 15, 2013
John Clarke says that a stent to bridge the stomach and small intestine may play a big role in treating patients with gastroparesis in the future.
Patients with gastroparesis don’t get a lot of good news from their physicians. Risky medications or gastric surgery have typically been the go-to solutions for people whose stomachs don’t empty properly.
Those less-than-ideal options prodded gastrointestinal motility specialist John Clarke and colleagues to a new approach: Rather than cut the pyloric valve, why not insert a stent to bridge the stomach and small intestine?
Now, results from three stent placements are promising. The write-up is soon to be published in the journal Endoscopy.
“I think this technique could potentially play a big role in the treatment of gastroparesis,” says Clarke, clinical director of the Johns Hopkins Center for Neurogastroenterology.
All of the patients that Clarke describes showed dramatic reductions in symptoms. A 15-year-old boy with chronic nausea and vomiting, for example, had endured unsuccessful trials of erythromycin, metoclopramide, domperidone and promethazine. He showed significant improvement after undergoing transpyloric stent placement. A 54-year-old man with idiopathic gastroparesis who also didn’t respond to medication experienced a complete recovery.
A third patient had minor complications that were remedied with relative ease. “Her stent migrated out and her pain came back,” says Clarke. Things were once again fine after the team repositioned the stent.
Technically, stent placement is pretty simple, says Clarke, and the risk appears to be minimal. “If it doesn’t work, you just take it out,” he says. “And, as opposed to gastric stimulation, which is done through surgery, this is just endoscopy. Although this sounds a bit unconventional, its safety looks better than anything else we have.”
Clarke explains that advances in stent technology played a key role in his team’s decision to move ahead with the pyloric stents.
Recently, the field’s seen creation of a flexible, covered stent “that you can place via the endoscope,” Clarke says. “The stent is metallic, but covered with a silicone lining so that the mucosa won’t grow into it. The stent was approved to treat obstructions, but hadn’t yet been used to treat gastroparesis.”
The number of patients with a gastroparesis diagnosis is on the rise, Clarke says. “I’d estimate that 30 percent of my clinical practice comprises patients with gastroparesis. And only about 30 percent of them are diabetic. Most of the patients I see have idiopathic disease.”
In the next few months Clarke expects to begin a larger trial of the stent placement.
“This is an experimental therapy, and the long-term benefits are unclear,” he explains. “However, given the few options currently available and the risk associated with those options, endoscopic stent placement may have a key role to play in managing this complex disorder.”
This was taken from The Wall Street Journal: http://online.wsj.com/article/PR-CO-20140422-906864.html
Evoke Pharma Initiates Phase 3 Clinical Trial of EVK-001 for Treatment of Gastroparesis
Evoke Pharma Initiates Phase 3 Clinical Trial of EVK-001 for Treatment of Gastroparesis
First Patient Enrolled in Study of Novel Intranasal Formulation and Delivery of Metoclopramide
SOLANA BEACH, Calif., April 22, 2014 (GLOBE NEWSWIRE) -- Evoke Pharma, Inc. (Nasdaq:EVOK), a specialty pharmaceutical company focused on treatments for gastrointestinal (GI) diseases, today announced the initiation of its Phase 3 clinical trial investigating the use of EVK-001, a novel metoclopramide nasal spray for the relief of symptoms associated with acute and recurrent diabetic gastroparesis in women.
"We are very pleased to have our Phase 3 clinical trial for EVK-001 underway with the enrollment of our first patient into the study," said David Gonyer, R.Ph., President and Chief Executive Officer of Evoke Pharma. "Our goal is to address an important unmet need in treating gastroparesis: a therapy that can improve the GI symptoms, including nausea and vomiting, that are characteristic of this disorder. Building on our successful Phase 2 placebo-controlled study, this Phase 3 study is designed to confirm the results that showed EVK-001 is an effective and well-tolerated drug candidate for women with diabetic gastroparesis."
"Gastroparesis in patients with diabetes can be very difficult to treat. There are limited FDA-approved options and the absorption of oral medications can be unpredictable," said lead investigator Dr. Henry P. Parkman, Director of the GI Motility Laboratory at the Temple University School of Medicine. "EVK-001 has shown promising safety and efficacy results in previous diabetic gastroparesis studies and may provide a valuable treatment alternative for this patient population. Unlike oral medications, intranasal delivery bypasses the GI tract and directly enters the bloodstream, allowing predictable absorption regardless of the gastric emptying delays and symptom flares associated with the disease."
Gastroparesis is a disorder in which the stomach is delayed in emptying its contents to the small intestine (in the absence of an obstruction). Characteristic symptoms are nausea, vomiting, abdominal pain, early satiety and bloating. Gastroparesis interferes with absorption of food and medications in the GI tract due to unpredictable gastric emptying and vomiting. Symptom flares vary in severity and diminish quality of life, negatively impact blood glucose control, and may lead to complications requiring hospitalization. The potential gastroparesis patient pool in the United States is approximately 12 to 16 million adults, with women making up over 80% of the affected population.
The Phase 3 clinical trial is a four-week, multicenter, placebo-controlled, double-blind, parallel-group study evaluating the efficacy, safety and population pharmacokinetics of EVK-001 in adult female subjects with diabetic gastroparesis and is expected to enroll 200 patients at sites across the United States. The trial is expected to be completed in 2015.
About Evoke Pharma, Inc.
Evoke is a specialty pharmaceutical company focused primarily on the development of drugs to treat GI disorders and diseases. The Company is developing EVK-001, a metoclopramide nasal spray for the relief of symptoms associated with acute and recurrent diabetic gastroparesis in women with diabetes mellitus. Diabetic gastroparesis is a GI disorder afflicting millions of sufferers worldwide, in which the stomach takes too long to empty its contents resulting in serious digestive system symptoms. Metoclopramide is the only product currently approved in the United States to treat gastroparesis, and is currently available only in oral and intravenous forms. EVK-001 is a novel formulation of this drug, designed to provide systemic delivery of metoclopramide through intranasal administration.
Safe Harbor Statement
Evoke cautions you that statements included in this press release that are not a description of historical facts are forward-looking statements. In some cases, you can identify forward-looking statements by terms such as "may," "will," "should," "expect," "plan," "anticipate, " "could," "intend," "target," "project," "contemplates," "believes," "estimates," "predicts," "potential" or "continue" or the negative of these terms or other similar expressions. These statements are based on the company's current beliefs and expectations. These forward-looking statements include statements regarding the ability of EVK-001 to address an important, unmet medical need; the enrollment and completion of the Phase 3 clinical trial; and the market opportunity for EVK-001. The inclusion of forward-looking statements should not be regarded as a representation by Evoke that any of its plans will be achieved. Actual results may differ from those set forth in this press release or the presentation due to the risk and uncertainties inherent in Evoke's business, including, without limitation: the inherent risks of clinical development of EVK-001, including potential delays in enrollment and completion of clinical trials, including the Phase 3 trial; Evoke will require substantial additional funding, including potentially to complete the Phase 3 clinical trial of EVK-001 as well as finance additional development requirements, and may be unable to raise capital when needed; the results observed in female patients with symptoms associated with acute and recurrent diabetic gastroparesis in Evoke's Phase 2b clinical trial of EVK-001 may not be predictive of the safety and efficacy results in the Phase 3 clinical trial or any other future trial; the potential for adverse safety findings relating to EVK-001 to delay or prevent regulatory approval or commercialization; Evoke's reliance on outsourcing arrangements for many of its activities, including clinical development and supply of EVK-001; the ability of Evoke to obtain, maintain and successfully enforce adequate patent and other intellectual property protection of its product candidate and the ability to operate its business without infringing the intellectual property rights of others; competition from other pharmaceutical or biotechnology companies; and other risks detailed in Evoke's prior press releases and in the periodic reports it files with the Securities and Exchange Commission. You are cautioned not to place undue reliance on these forward-looking statements, which speak only as of the date hereof, and Evoke undertakes no obligation to revise or update this press release to reflect events or circumstances after the date hereof. All forward-looking statements are qualified in their entirety by this cautionary statement. This caution is made under the safe harbor provisions of the Private Securities Litigation Reform Act of 1995.
CONTACT: Investor Contact: The Ruth Group David Burke Tel: 646-536-7009 firstname.lastname@example.org Media Contact: The Ruth Group Aaron Estrada Tel: 646-536-7028 email@example.com
The Wall Street Journal news department was not involved in the creation of this content.
This was taken from The Daily Mail: http://www.dailymail.co.uk/health/article-2616629/I-havent-eaten-FIVE-YEARS-Teenager-fed-tube-stomach-paralysed.html
'I haven't eaten for FIVE YEARS': Teenager has to be fed through a tube in her neck because her stomach is paralysed
Ayllah-Beau Foley has gastroparesis - her stomach muscles are paralysed
She started being sick when she returned from a trip to India five years ago
She first thought she'd picked up an illness in India but rapidly deteriorated
Doctors were initially baffled until discovering her stomach was paralysed
She has tried various treatments but they have failed to help her
She now has to be fed through a tube in a vein in her neck
A teenager has not eaten a meal for almost five years because she has a rare condition which paralyses her stomach.
Ayllah-Beau Foley, 19, from Cheltenham, Gloucestershire, has been in agony for years since she developed gastroparesis - a rare condition which paralyses the stomach muscles.
The teenager is now only able to eat the tiniest amounts of food and is fed through a feeding tube directly to her bloodstream.
Ayllah-Beau Foley, 19, has a rare condition which means her stomach is paralysed and unable to process food
Ayllah-Beau said: ‘Having this condition has really changed my life.
‘I can’t sit down for meals with my family anymore, I can’t eat out with my friends - I can’t even tuck into a Sunday lunch.
‘I have a twin brother, Jordan, but we can’t eat cake together on our birthday - if I tried, I’d just be sick.
‘It is really hard but I try and stay positive, and I just hope I can beat this horrible illness one day.’
Ayllah-Beau’s condition first developed when she returned from a volunteering project in India.
She said: ‘I was so excited to go to India with school and I couldn’t wait to get out there and get stuck in.
Ayllah-Beau vomits if she tries to eat, so she has to be tube-fed to ensure she gets the nutrients she needs
Ayllah-Beau (pictured with her mother, Christine) has tried various treatments but all have failed
She now has to be fed directly into her bloodstream through a tube in her neck. She is pictured with her mother, Christine, and the device that supplies her nutrients
‘But when I came back I just felt awful and started to get really ill.
‘I assumed it was just food poisoning I’d picked up out there, but it just got worse and worse.’
WHAT IS GASTROPARESIS?
Gastroparesis is a chronic condition in which the stomach is unable to empty in the normal way.
Symptoms including feeling sick and vomiting when eating, bloating, loss of appetite and weight loss.
The problem is thought to be caused by a problem with the nerves or muscles controlling the emptying of the stomach.
In many cases, the cause of this nerve damage is unknown but it can also be caused by poorly controlled diabetes.
Other possible causes include Parkinson's disease, multiple sclerosis and some medications.
The condition cannot be cured but it can usually be controlled.
Some people are able to manage the condition by changing their diet, for example by eating six small meals a day or by sticking to soft, easily digestible foods.
In some cases, symptoms can be improved with medication but other people require injections of Botox into the valve between their stomach and small intestine.
If all of these options fail, a patient can have a new procedure which involves fitting a pacemaker device to encourage the stomach to process food.
If none of these options succeed in making the stomach process food, the patient will have to be fed through a tube.
Source: NHS Choices
It soon became clear that Ayllah-Beau needed medical attention, and her parents took her to the doctors.
Her mother and full-time carer, Christine, 46, said: ‘At first we assumed that Beau just had Delhi belly - something that she’d picked up when she was out there, but she wasn’t getting any better.
‘Eventually we took her to the doctors but they seemed stumped too.
‘At first they thought it was something to do with her appendix, but they did an operation and couldn’t find anything.
‘Then they thought it might be gynaecological but again that wasn’t the answer.
‘Medics even began to suggest that Beau’s condition could be psychological.
‘We were quite annoyed that there was a suggestion that this was all in her head, when that quite clearly wasn’t the case.’
After further tests and examinations Ayllah-Beau was finally diagnosed with gastroparesis.
Her mother said: ‘We were shocked to hear that her stomach muscles were paralysed - we had no idea that something like that was even possible, but it was a relief to get a diagnosis too.
‘Beau had lost about three stone in weight, so it was great to think that something was finally going to be done and she could get better.
‘But it soon became apparent that this wasn’t the kind of diagnosis we had wanted.’
Ayllah-Beau has tried various treatments since her diagnosis, including a feeding tube directly into her bowel, and a gastric pacemaker, but none have cured her condition.
The gastric pacemaker sent electrical pulses to her stomach to try and stimulate the muscles, but it failed to help her.
She now relies on a feeding tube that sends nutrients straight into her bloodstream through a drip in a vein.
This means the nutrition bypasses her normal digestive system altogether.
Ayllah-Beau first fell ill after returning from a trip to India (pictured). She initially thought she had 'Delhi belly' but decided to visit her doctor when her condition continued to deteriorate
Doctors were initially baffled by Ayllah-Beau's illness and even suggested it could be psychological
Her mother said: ‘The tube she has now feeds nutrients into her jugular vein and transports them to her heart and the rest of the bloodstream.
‘She is fed for 14 hours overnight to keep her alive.
‘At the moment that is the best treatment that she can have, and we just have to hope that there is something better around the corner.’
But despite being fed essential nutrients, Ayllah-Beau still wishes she could eat like everybody else.
She said: ‘I still get cravings for things like chocolate, sweets and burgers.
‘I might have a teeny tiny bite every now and then, just to satisfy the craving, but it’s not the same.
‘It’s horrible because I used to love different foods so much, and now I can’t have any of them.
‘I’m exhausted all the time, so I have to see what my friends get up to from Facebook.
Ayllah-Beau's nutrients are now given to her in a way that completely bypasses her digestive system
Ayllah-Beau's food has to be specially prepared for her and is fed into her bloodstream for 14 hours a day. She is pictured with a fridge full of the solution she is fed
‘My twin brother, Jordan, is a soldier and sometimes it can be difficult seeing him so active when I’m cooped up in bed all the time - but of course I’m so proud of him.
‘I’ve come to accept my condition now and I take each day as it comes.
‘I hope that one day, I’ll be back to my normal self, but for now I try to stay as positive as I can.’
Dr Simon Gabe, a Consultant Gastroenterologist at St Mark’s Hospital, in Harrow, who treats Ayllah-Beau said: ‘Gastroparesis is rare. It is a condition describing weakness of the muscles of the stomach, meaning that the food in the stomach does not empty well.
‘This results in a feeling of fullness that continues for longer than normal, nausea and vomiting. Patients will lose weight as a result.
‘It is estimated that it affects one in 50,000 of the population and is more common in women than men.
‘The commonest cause is diabetes, occurring in diabetics who have had poor diabetic control over many years.
Ayllah-Beau desperately hopes she will eventually be able to eat normally again
Ayllah-Beau's illness means she is exhausted all the time and she says it is hard not to be able to go out with her friends. Image shows tubes entering her stomach before she started being fed through a vein in her neck
‘However, there is an increasing group of patients that have gastroparesis as part of a problem affecting the whole of the gut - when the nerves or muscles in the gut do not work in a coordinated way. This causes abdominal pain, vomiting and weight loss.
‘This is a dysmotility of the gut and while there are a number of possible causes, generally we do not know the cause and this is called Chronic Idiopathic Intestinal Pseudoobstruction (CIIP).
‘This is a young group of patients and the symptoms of gastroparesis are often missed. Poor appetite, vomiting and weight loss in young women may be considered to be an eating disorder, but for some of these patients gastroparesis may play a part.’
Ayllah-Beau is raising money for St Mark's Hospital. To donate, click here.