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firstname.lastname@example.org (949) 342-6128
"My daughter had intussusceptions at age 3 and 10. Both times resulted in bowel resections. At the time of her first surgery they also removed her appendix. She also has had painful and irregular menstrual cycles."
"I am searching for anyone who has to have their stomach should be removed due to it being covered with polyps"
"My 5-year-old has PJS, had 2 colonoscopies so far within 6 months period due to blood in his stool. They removed 8 polyps!"
"Pill cam that I had this past June showed over 100 polyps!!!"
"I just had the results for my son's MRI (9years old). They found polyps very far inside small intestine and colon. The GI doctor is afraid."
"Just wondering if any of you have a child who has refused medical treatment due to fear/trauma!"
"6th Balloon Enteroscopy, doctor took on average of 20 polyps each time."
" My 6-year-old was just diagnosed with PJS. She has been suffering with stomach pain for at least 6 months now. It was only until we went to a new dentist."
" My daughter has PJS and is 10 years old. She was diagnosed at 7. "
" My son just turned 12 and was diagnosed with PJS last fall. He has had problems with sinus, polyps for years and then last summer he had a blockage caused by a polyp in his small intestine."
" My daughter has inherited the PJS and she had a small bowel MRI last June. She was diagnosed with large polyp which probably started from terminal ileum."
" My daughter was born with tetralogy of fallot and pulmonary atresia. They are saying her chromosome deletion probably caused both the heart and PJS."
"Good Evening our 15 year old daughter was diagnosed with PJS approx. 6 months ago. We are going to be hosting a fundraiser for her to offset some of the medical/travel expenses. We would like to donate a portion not only of this event but any future events that we may have. We would love to start a relationship with a group that we know will be using the money to help all the PJS families. My husband and I are still waiting for our results from the genetic dr. and soon will have our other two children tested. I like to believe that my family are not only fighters but can honestly make a difference. Please let me know how we can help and whom we can speak to."
"Me and my mother had PJS polyps. We are getting treated frequently for the past 4 years and got removed all polyps. Recently mother got stomach pain and after tests, Doctors confirmed that she was effected with ovarian cancer due to Peutz Jeghers Syndrome .And as of now all my polyps are removed. Please let me know the better treatment and preventive measures for PJS polyps."
" PJS runs in my family big time. My father and my brother and I have it. The biggest thing we have done to make our lives better is to educate ourselves and find a doctor who is familiar with PJS and other polyposis diseases. Regular checkups have also been a big bonus."
"This is my husband. 2 years ago he almost died and was diagnosed with PJS after 5 blood transfusions and a major surgery. Is is 35 years old and has to go for iron transfusions and b12 shots every 3-4 months as he is severely anemic. We have two young daughter's ages 1 1/2 and 5 years old who need to be tested.
Please read and share our story.
Funds raised will be used to have genetic testing for my husband and our daughter's and also be donated to research to help others with this disease."
"Yes, I want you to post my note on site and get more suggestions. Please let me know details of treatment and all help needed to save my mother. Kindly do the needful."
"My father, son, daughter and myself all have PJS. My father had Rheumatic fever as a child, an intussusception in his 20s and diet at age of 40 from pancreatic cancer that spread to this liver and lung!"
“This is an amazing Mission. We are truly grateful for what Curingenetics, the medical professional have set to accomplish. Their mission is very clear. We are very hopeful that given the right resources coupled with today’s technologies, soon there will be solutions to these serious genetic mutation issues. We are forever grateful and we are fully on board to support this cause and objective. We urge everyone to participate and at the minimum just voice their support and need for assistance."
"We admire your love and support for your family! Curingenetics.org is the FIRST EVER PJS organization and we will not rest until viable solutions for families like yours are available. There is NO reason why we should have to simply "watch and wait for a medical emergency."
"This is an amazing start to building an effort dedicated to LKB1, LKB1 mutations, and PJS. The answers to important clinical questions surrounding LKB1, lie within research labs around the country and world. Thank you for creating this effort and the hope that it provides."
"Please help us find a cure for PJS. This is a long time dream of everybody who suffers from this syndrome. I know that there is no magic or an instant solution to anything but at least we need something that will make our conditions easier to handle for all of us. Please help our PJS community."
"This is wonderful that you have moved forward with establishing a website and foundation for a 'PJS Alliance'. Only good things can come of this."
"Indeed! Its time to change the trajectory of our care, treatments and outcomes. Please share your supportive comments for this mission. We want to make this reality NOW."
"In October of 2015 I had gastroscopy and removal of few large polyps in my stomach. Unfortunately, one of the stumps continued to bleed."
"My daughter has PJS, she's 21 and started having seizures last year. The doctor cannot figure out why. I wondered if it had anything to do with PJS."
" My son has stops on his mouth, on his lips a on his fingertips. He had Jaundice shortly after birth and at the age of 4 he was diagnosed with acute Thrombocytopenic Purpura. As a teenager, he was diagnosed with a heart murmur. He had emergency surgery for a large bleeding polyp and 2 colonoscopies and endoscopies so far."
" My daughter with high functioning Asperger's syndrome had an intussusception at age 3 and a second time at age 10. Both times resulted in bowel resections, at the time of her first surgery they also removed her appendix. She also has had painful and irregular menstrual cycles."
" My granddaughter aged 17 had first diagnostic PJS procedures which included the camera."
"Words can't describe the poor qualify of life and the sufferance PJS children and adults experience on a regular basis."
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