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 Pseutz Jgehers Syndorme.And as of now all my polyps are removed.Please let me know the better treatment and preventive measures for PJS polyps.
via dendritic cells
Restoration of silenced PJS gene, LKB1
"We are in receipt of many more
many thanks for your participation"
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Autophagy & LKB1
We were shocked, lost and confused at first. We did not know which way to turn and didn’t know if there were any options or support other than the normal screening (wait and see) protocol. We started to look at many public and private means world-wide. We were starving for information as to how to stay ahead of these issues. Years of research and meetings with the greatest minds paved the way for better understanding and possible solutions to not only stay ahead but to also work on finding possible permanent solutions. We believe that our lives’ purposes are to share and help our fellow families who are also dealing with similar circumstances. Based on years of research and meetings with many professionals we are of the strong opinion and positive belief that soon there could be Cures for these life threatening health issues. There are teams of professionals at well-known universities and other institutions who are willing and able to assist us with our mission and objectives. We could really use financial support to help them keep up with the costs associated with these activities.
that underlie LKB1
"Stay ahead and limit the What Ifs!"
Supportive Comments & Professional Medical Teams for Cures
Awareness, Screening & Nutrition for Healthier Lifestyles
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.
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.
LKB1 is inactivated
Embryonic Stem Cells
LKB1 tumor suppressor
“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."
Example of sharing Voices!
Just got back from the polyposis meetings in Baltimore. There is a clear national and international professional presence interested in PJS.
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.
Ability to identify Cancerous Genes
LKB1 & PJS
"It is said that Lung Cancer in the U.S. alone negatively impacts about 436 people per day,
about 30% (131 people per day) could
be helped with Our cause!"
Peutz-Jeghers Syndrome (PJS) places an increased risk of developing hamartomatous polyps in the digestive tract and other areas of the body, as well as 93% increased risk of developing cancer throughout life. Cancers associated with PJS include pancreatic, stomach, ovarian, cervical, colon and breast. A hamartoma is a growth of tissue that develps into a benign tumor. However, a benign tumor can become cancerous over time.
It is the professional opinion of many scientists and researchers across the globe that the cure for the underestimated and overlooked PJS could lead the way to effective treatments for many other life threatening issues, where LKB1 (STK11) gene mutation is at the center.
LKB1 (STK11) is also known to be mutated in several other diseases such as lung and pancreatic cancers which affect millions of families world-wide.
The mutation of LKB1 tumor suppressor gene can lead to an imbalance in homeostasis and potential loss of cell polarity giving rise to polyp formation and tumor growth.
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.
"We gratefully acknowledge all the medical professionals for their continuing scientific and medical support"
The Mission of CurinGenetics is to help people affected by PJS and LKB1 gene mutations secure effective treatment and preventative measures for the elimination of polyp formation and reversing of LKB1 gene mutations. The ultimate goal is to have a world without Peutz Jeghers Syndrome (PJS) and LKB1 gene mutations, therefore lessening cancer risks for the benefit of millions of people affected, many unaware due to hidden symptoms.
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.
PLEASE EMAIL US YOUR COMMENTS IN SUPPORT OF OUR MISSION 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."
Voices, Support & Awareness
Bottom line, most all GI doctors agree that for the time being, the best way to handle these conditions are to screen. Regular screening could also subject individuals and families to mental impact and multiple general anesthesia (depending on the type of screening). However, because screenings are important for individuals with PJS, it is our opinion that screening out-weights the possible negative mental impact and multiple anesthesia's possible consequences. Given the aforementioned, we strongly believe it is as important to increase awareness and further strengthen our alliance to assist these scientists, researchers and alike so they can identify viable options for ceasing polyp origination and ultimately reversing the LKB1 mutated gene. We are of the strong opinion that with our unity formation and successful fund raising, these great medical teams will soon find permanent cures for these serious life threatening issues.
Hope in Action with Positive Belief
Peutz-Jeghers syndrome; LKB1, STK11; Polyp; Cancer; Polarity; Lung adenocarcinoma; Kinase; AMPK; Mtor: Energy Metabolism; diabetes
Epigenetics & Environment
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.
I would love to get involved! I started my career working with PJS 16 yrs ago and we have done quite a lot work on PJS research.
Yes, I want you to post my note on site and get more suggestions.Please let me know detaills of treatment and all help needed to save my mother.Kindly do the needful.
STOP POLYP FORMATION
ULTIMATELY REVERSE LKB1 MUTATION
"Special thanks to many who have already made contact to support"
Our main objective and mission is to find Cures for PJS, Stop polyp formation and ultimately Reverse LKB1 gene mutation via direct or independent means.
We are also helping with awareness campaigns and sharing of general information for the benefit of all.
Established relationships with
Major Universities and Private Institutions
Good Evening our 15 year old daughter was diagnosed with PJSapprox. 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.
A simpler way to explain is that there are two copies of LKB1 (STK11) tumor suppressor gene. However, in cases of PJS and other notable serious life threatening issues, one tumor suppressor (LKB1) copy is mutated therefore leaving only one copy working properly!
Due to LKB1 being a master tumor suppressor, the overwhelming consensus is that these mutations result in imbalances that may be a direct cause for inappropriate expansion of epithelial cells resulting in inflammation, polyps and tumors.
If the resulting polyps are undetected they could grow in size and serve serious sudden bleeding and life threatening issues. One such issue is intussusception, at times requiring immediate surgical intervention. These polyps could also become cancerous tumors over time if left undetected.
We must stay ahead of these serious health issues, be proactive and help millions of people. Due to the often hidden symptoms, many may not even know they are affected until sometime later in life when all the sudden they are diagnosed with cancer or other serious life threatening issues.
Help us support these great scientific minds find cures for PJS and potentially more diseases with LKB1 tumor suppressor gene mutations. After many years of research we are all of the strong opinion and belief that this is an achievable objective - to cease polyp formation and ultimately reverse the LKB1 gene mutation.
Peutz Jeghers Syndrome (PJS) & LKB1 (STK11)
Paving the way
for a New Era
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Information on this site is not meant as medical advice. Please contact your doctors for direct and subjective instructions. Curingenetics has clear a mission to help medical professional find Cures for PJS and LKB1 gene mutations.