What a treasure. Thank you Dr. Davis for all that you do. Two weeks ago I didn’t know I needed you. Now I’m thanking my lucky stars for you & the other medical professionals researching & helping those us with a CDH1 mutation.
❤️ 💕 💖 💜 😍 Dr. Davis!!! For EVERYTHING he does! What a great surgeon, compassionate doctor, thoughtful researcher, excellent educator and CDH1 mutation advocate!!! Thank you for this informative video. I look forward to seeing many more future ones.
My husband recently found out he has CDH1 and this is just everything. We know how blessed we are. The discovery of this genetic mutation and the ability to test for it is just so unbelievably revolutionary. I can’t believe that we are the first generation to be able to benefit from genetic testing/studies to this extent. I fell to the floor, not when we found out he had it, but when I came to the realization of how truly aggressive the nature of his genetic mutation was and how blessed we are that it was discovered. All that being said, it is much different for him since he is a carrier of the CDH1 genetic mutation and he has been an anxious ball of nerves and losing sleep, and he just sent me this, and this is such a light in the darkness for him.
Erin, please connect with our Facebook group “CDH1 mutation gene”, if you haven already. You and your husband will find so much support and encouragement. There are so many of us that have been down this road that are doing great and enjoying life. I enrolled in the NIH study a little over a year ago and Dr. Davis performed my Total Gastrectomy at NIH back in April. I’m 6 months post-op and doing great! Dr. Davis and his team are the BEST!
Melanie Kirk This is such great news to hear! I am so so happy for you! ❤️ My husband, Joey, has actually connected with NIH and Dr. Davis, and again we are so blessed that we live in Baltimore County (Maryland) which is a hop, skip, and a jump away from NIH. This whole experience is just a wave of crazy emotions, and for the most part, they are all positive. Joey joined a CDH1 FB Group - I’ll have to check with him if it is the one you suggested - and if it isn’t I will have him join! . I think it is both a source of comfort and a pain point for him at times. When we see people post encouraging photos we are are touched on this beautiful and deep level. I remember the first time he showed me a post about someone post-surgery saying that they were a seahorse and I remember just busting into tears - and not in bad way. It just touched me so. I’ll have to double check to see if this FB Group is the one he is a part of. I never joined bc I didn’t know if I would be an intruder in the community. I can’t wait to show him your comment. It was actually some of the comments in the FB Group now that scared him - that some people had shared that their post-op recovery took several months or there were complications. I can’t help but stay positive, but I also know to be very sensitive around his emotions bc they are all valid. Anyway - sharing with him your actual experience with NIH will make him so happy!
Yay! I’m so glad you are already connected with NIH. You guys are in the best possible hands! And spouses/family members/caregivers are 100% welcome in the Facebook group.
Erin, for so many of us, it is devastating and traumatic to find out that a loved one has this horrible condition. Dr. Davis did my husband's TG 6/27/18. We are in Richmond, VA so we also feel so fortunate to be close to NIH. It's the best! I'm glad you've found the best support and the best place.
I'm absolutely thrilled to see this video! It's concise but there's a lot of good information packed in 7 minutes. Thank you, Dr. Davis and team for doing this. I hope you'll be able to do more, too.
Thanks for making this video Dr. Davis! I live in Winnipeg, Manitoba Canada. My dad, uncle, two cousins, and me have all had TGs due to the mutated CDH1 gene. All but one did aggressive screening until we found cancer, and one had it done prophylactically. Videos like these are a great tool for those who's family's are confused (and often not supportive) about the implications of this mutated gene. Please do put out additional videos. I would be particularly interested in hearing your views on early genetic testing for kids. I hear so many amazing things about you and your team at NIH, and even used some of the literature that NIH has created following my TG. Keep up the good work, and please, keep these videos coming!
Another great support community is our Facebook page titled "CDH1 mutation gene." Yes the period is in the name. A thousand CDH1 folks who have either had their stomach out, are considering having their stomach out or have a relative(s) with a pathogenic CDH1 gene mutation. Come join a terrific, supportive community who know what you are going through and can help you on your journey.
What a treasure. Thank you Dr. Davis for all that you do. Two weeks ago I didn’t know I needed you. Now I’m thanking my lucky stars for you & the other medical professionals researching & helping those us with a CDH1 mutation.
❤️ 💕 💖 💜 😍 Dr. Davis!!!
For EVERYTHING he does! What a great surgeon, compassionate doctor, thoughtful researcher, excellent educator and CDH1 mutation advocate!!!
Thank you for this informative video. I look forward to seeing many more future ones.
My husband recently found out he has CDH1 and this is just everything. We know how blessed we are. The discovery of this genetic mutation and the ability to test for it is just so unbelievably revolutionary. I can’t believe that we are the first generation to be able to benefit from genetic testing/studies to this extent.
I fell to the floor, not when we found out he had it, but when I came to the realization of how truly aggressive the nature of his genetic mutation was and how blessed we are that it was discovered. All that being said, it is much different for him since he is a carrier of the CDH1 genetic mutation and he has been an anxious ball of nerves and losing sleep, and he just sent me this, and this is such a light in the darkness for him.
Erin, please connect with our Facebook group “CDH1 mutation gene”, if you haven already. You and your husband will find so much support and encouragement. There are so many of us that have been down this road that are doing great and enjoying life. I enrolled in the NIH study a little over a year ago and Dr. Davis performed my Total Gastrectomy at NIH back in April. I’m 6 months post-op and doing great! Dr. Davis and his team are the BEST!
Melanie Kirk This is such great news to hear! I am so so happy for you! ❤️ My husband, Joey, has actually connected with NIH and Dr. Davis, and again we are so blessed that we live in Baltimore County (Maryland) which is a hop, skip, and a jump away from NIH. This whole experience is just a wave of crazy emotions, and for the most part, they are all positive.
Joey joined a CDH1 FB Group - I’ll have to check with him if it is the one you suggested - and if it isn’t I will have him join! . I think it is both a source of comfort and a pain point for him at times. When we see people post encouraging photos we are are touched on this beautiful and deep level. I remember the first time he showed me a post about someone post-surgery saying that they were a seahorse and I remember just busting into tears - and not in bad way. It just touched me so. I’ll have to double check to see if this FB Group is the one he is a part of. I never joined bc I didn’t know if I would be an intruder in the community.
I can’t wait to show him your comment. It was actually some of the comments in the FB Group now that scared him - that some people had shared that their post-op recovery took several months or there were complications. I can’t help but stay positive, but I also know to be very sensitive around his emotions bc they are all valid. Anyway - sharing with him your actual experience with NIH will make him so happy!
Yay! I’m so glad you are already connected with NIH. You guys are in the best possible hands! And spouses/family members/caregivers are 100% welcome in the Facebook group.
Erin, for so many of us, it is devastating and traumatic to find out that a loved one has this horrible condition. Dr. Davis did my husband's TG 6/27/18. We are in Richmond, VA so we also feel so fortunate to be close to NIH. It's the best! I'm glad you've found the best support and the best place.
Thank you Dr. Davis! This is information that took me months to figure out. It's great to have such clear answers in this format. Keep 'em coming.
Thank you, Dr. Davis, for such an excellent video. Thanks for all you and the team do for us!
I'm absolutely thrilled to see this video! It's concise but there's a lot of good information packed in 7 minutes. Thank you, Dr. Davis and team for doing this. I hope you'll be able to do more, too.
Thanks for making this video Dr. Davis! I live in Winnipeg, Manitoba Canada. My dad, uncle, two cousins, and me have all had TGs due to the mutated CDH1 gene. All but one did aggressive screening until we found cancer, and one had it done prophylactically. Videos like these are a great tool for those who's family's are confused (and often not supportive) about the implications of this mutated gene. Please do put out additional videos. I would be particularly interested in hearing your views on early genetic testing for kids. I hear so many amazing things about you and your team at NIH, and even used some of the literature that NIH has created following my TG. Keep up the good work, and please, keep these videos coming!
Another great support community is our Facebook page titled "CDH1 mutation gene." Yes the period is in the name. A thousand CDH1 folks who have either had their stomach out, are considering having their stomach out or have a relative(s) with a pathogenic CDH1 gene mutation. Come join a terrific, supportive community who know what you are going through and can help you on your journey.