This video was really interesting to watch as someone with limited knowledge of cancer. I’m glad to see you’re doing well. I am aware it’s unrelated to this video, but I just want to thank you for all your videos educating on EDS, POTS, and gastroparesis. My grandma who’s in her 70s is currently in the process of getting an hEDS diagnosis, after having dysautonomia, gastroparesis, and so many other EDS comorbidities that no doctor could come up with any explanation of what the root cause was. I was diagnosed with pots back in July, and started watching your videos on it to try and get a better understanding of it. I ended up going through your whole channel and found your EDS and gastroparesis content. Because my grandma and I have very similar symptoms, I asked her if she had either eds or gastroparesis. She told me she has gastroparesis and that it runs in the family,but that she had no clue what eds was. She ended up looking it up a few days later and told me how crazily it lines up with her symptoms. She’s had everything from crazy dislocations to waking up fully mid surgery. She’s now working with her doctor to get diagnosed with EDS. I just want to thank you for in an indirect way finally helping to figure out what’s caused my grandma so much pain and problems over the course of her life (and potentially helping figure out what’s wrong with me too).
Thanks for sharing, and I'm so glad to hear your grandma i will hopefully have some answers to these things she's been experiencing all her life. Wishing you both the best!
As someone with Lynch Syndrome (my mutation is MSH6), I am so grateful for cancer genetics! Thank you for this video! (Fellow EDSer here, too. I have always loved your videos.)
Wait, I have both of these, too!! MSH6 from my mom and Heds from my dad. I was recently diagnosed with both, so it’s been pretty overwhelming. It was crazy (not nice diagnosis for either of us!) to see your comment and not feel like I am an anomaly with so much going on in one body.
@@adriennegiffen Oh wow! A fellow EDSer with MSH6, too? It's wild to see this! Sometimes it can feel pretty alone to have both. Hope you are doing ok with the diagnoses (I know they are both a shock at first!).
It's so good to see you Izzy! I was recently diagnosed with POTS, hEDS, and MCAS and your channel has been one of the main things helping me to understand and reconcile with those diagnoses (especially that my life isn't over now, which is how a lot of online resources make me feel). I'm glad you're going to continue helping people through genetic counseling, we need more providers like you!
I went through genetic cancer testing about 1.5 years ago because my Mom passed from pancreatic cancer (and her parents also had cancers). Mom was a biology major who wanted to contribute to the data base to see if she had any markers (CHEK2, for the sake of her children and humans in general). Bless you for putting these videos out. (Stumbled upon you due to son dating a wonderful woman with EDS and I want to understand it better.)
So good to see you again! Glad your rotation was interesting and that you get a chance to see the different variations of genetic research without having to commit to one too early.
Hi Izzy! It's been so long since I've heard from you. I have a genetic condition (OTC deficiency, NF1 and EDS) Been watching your channel for a while and I'm so proud of how far you're growing in your career.
I’m so glad to see you’re going this route with your education! I’ve been watching your videos while having to self diagnose my Ehlers-Danlos. My daughter has a spontaneous mutation of the LZTR1 gene causing Noonan Syndrome. It’s a tumor suppressing gene, and is commonly linked to childhood cancer. Having to take her to the hem/onc next week due to some concerning blood work. Once I put the EDS pieces together (myself & 4 gens if my paternal side fit the criteria for classical and kyphoscoliotic, but considering how most of my family is affected, I’d assume Classical.) My grandmother & great-grandmother passed in their 40s due to multiple myeloma, so now I’m making myself go crazy trying to figure out a link between MM & EDS, and a link between the LZTR1 mutation and our specific EDS gene. Should have my panel results back in a few days and I’m hoping it’ll give me some answers for the first time in my life. Have you seemed to notice any specific connections between eds & cancer??
Hi Izzy 😊 I came across your channel recently, as I've been wanting to watch people that make me feel less alone with my chronic illnesses. I just wanted to say that i adore your personality and you definitely have made me feel less alone.
I as a baby was diagnosed with a mutilated PAX-6 gene. Later in life, I was diagnosed with something that I was told is rare called NEXMIF. I wish that more people would go into genetics in a more investigational of rare genetics where they would try to solve the rare diagnosis that doesn't follow the doctor's textbooks? I hope that you are doing well and I hope that you could make some new videos?
So great to see you again in my youtube videos! I've missed you a lot especially as I found your channel later on in my diagnosis (hEDS and POTS as well as probably others..) journey... It's late in the night for me, and brain fog is real but it sounded like your next rotation was some way linked with disautonomia and pots...? If I have understood correctly I am so impatient to learn more!. Love, light, and spoons to you and all those who need them! Judith
Thanks Judith! The next rotation is on genetic metabolic disorders and lysosomal storage disorders! My cardiovascular genetics rotation is the one with hEDS and POTS...that was my 4th rotation, so keep a look out for that video in the coming weeks/months.
I wonder if you're now using tools for exploring genomes that I've worked on (CWL being one of them) This is all so exciting and we're rooting for you!
5:49 - I couldn't stop laughing after you said that! That's a phrase I've never heard before, and it just sounded hilarious to me. I have a pretty warped sense of humor after having three different types of cancer. :)
Hi Izzy! I absolutely love your videos. I want to go down the path of genetic counselling, too. Do you have a video where you explain how you did it? How hard it was, how long it's been taking?
Love your videos! I have EDS and a few comorbidities and Birt Hogg Dubé which means I have a mutation on the FLCN gene c.584del and BHD presents with fibrofolliculomas, benign growths in the lungs, spontaneous pneumothorax (lung collapse), and a specific type of kidney cancer. Just thought you’d find that interesting! ❤️
Hey this isn’t the video for this but it’s your most recent 😂 try Solomons Seal salve and tincture it helps with all connective tissues (obviously won’t reverse dna commands ) but it helps me 😅 and it literally cannot hurt
My sister has a Rare Stomach cancer. I wish you could have helped her find it way sooner so she wouldn’t have had to go through the struggles that she had. She has only a sliver of her stomach left and she’s still having to go through chemotherapy. She went to the Sarah Cannon clinic at Sentinel hospital in Nashville for her cancer treatment.
You should volunteer to be in your school's institutional review board committee (reviewing human subjects research). It looks great on your resume and you learn a lot 😊
You can still ask about being on the IRB. Sometimes they do pay a stipend and honestly it's not a ton of work. The federal regulations require that there's one unaffiliated members on the committee. We had a geneticist on our committee for a while and it was really helpful, especially for research that includes return of results.
@@IzzyKDNA brain fog 🤦🏽♀️... It just clicked in my head that our IRB meetings are all remote lol. If you're ever interested in being on an IRB let me know and I can reach out to our management and see if we might need more IRB members. I work for a university that's one of the top medical schools and we also are one of the highest recipients of federal funding for research 😊
This video was really interesting to watch as someone with limited knowledge of cancer. I’m glad to see you’re doing well. I am aware it’s unrelated to this video, but I just want to thank you for all your videos educating on EDS, POTS, and gastroparesis. My grandma who’s in her 70s is currently in the process of getting an hEDS diagnosis, after having dysautonomia, gastroparesis, and so many other EDS comorbidities that no doctor could come up with any explanation of what the root cause was. I was diagnosed with pots back in July, and started watching your videos on it to try and get a better understanding of it. I ended up going through your whole channel and found your EDS and gastroparesis content. Because my grandma and I have very similar symptoms, I asked her if she had either eds or gastroparesis. She told me she has gastroparesis and that it runs in the family,but that she had no clue what eds was. She ended up looking it up a few days later and told me how crazily it lines up with her symptoms. She’s had everything from crazy dislocations to waking up fully mid surgery. She’s now working with her doctor to get diagnosed with EDS. I just want to thank you for in an indirect way finally helping to figure out what’s caused my grandma so much pain and problems over the course of her life (and potentially helping figure out what’s wrong with me too).
Glad that your pending diagnosis could give your grandmother some answers, and perhaps a diagnosis of her own.
Thanks for sharing, and I'm so glad to hear your grandma i will hopefully have some answers to these things she's been experiencing all her life. Wishing you both the best!
As someone with Lynch Syndrome (my mutation is MSH6), I am so grateful for cancer genetics! Thank you for this video! (Fellow EDSer here, too. I have always loved your videos.)
Wait, I have both of these, too!! MSH6 from my mom and Heds from my dad. I was recently diagnosed with both, so it’s been pretty overwhelming. It was crazy (not nice diagnosis for either of us!) to see your comment and not feel like I am an anomaly with so much going on in one body.
@@adriennegiffen Oh wow! A fellow EDSer with MSH6, too? It's wild to see this! Sometimes it can feel pretty alone to have both. Hope you are doing ok with the diagnoses (I know they are both a shock at first!).
It's so good to see you Izzy! I was recently diagnosed with POTS, hEDS, and MCAS and your channel has been one of the main things helping me to understand and reconcile with those diagnoses (especially that my life isn't over now, which is how a lot of online resources make me feel). I'm glad you're going to continue helping people through genetic counseling, we need more providers like you!
I went through genetic cancer testing about 1.5 years ago because my Mom passed from pancreatic cancer (and her parents also had cancers). Mom was a biology major who wanted to contribute to the data base to see if she had any markers (CHEK2, for the sake of her children and humans in general).
Bless you for putting these videos out. (Stumbled upon you due to son dating a wonderful woman with EDS and I want to understand it better.)
Good to see you again!
❤❤❤❤
Really glad I found your channel. I’m about to start my educational journey towards genetic counseling
Congrats. You're doing great and I'm proud of you!
Thank you so much!
So good to see you again! Glad your rotation was interesting and that you get a chance to see the different variations of genetic research without having to commit to one too early.
Hi Izzy! It's been so long since I've heard from you. I have a genetic condition (OTC deficiency, NF1 and EDS) Been watching your channel for a while and I'm so proud of how far you're growing in your career.
thank you so much!
I’m so glad to see you’re going this route with your education! I’ve been watching your videos while having to self diagnose my Ehlers-Danlos. My daughter has a spontaneous mutation of the LZTR1 gene causing Noonan Syndrome. It’s a tumor suppressing gene, and is commonly linked to childhood cancer. Having to take her to the hem/onc next week due to some concerning blood work. Once I put the EDS pieces together (myself & 4 gens if my paternal side fit the criteria for classical and kyphoscoliotic, but considering how most of my family is affected, I’d assume Classical.) My grandmother & great-grandmother passed in their 40s due to multiple myeloma, so now I’m making myself go crazy trying to figure out a link between MM & EDS, and a link between the LZTR1 mutation and our specific EDS gene. Should have my panel results back in a few days and I’m hoping it’ll give me some answers for the first time in my life.
Have you seemed to notice any specific connections between eds & cancer??
It's great to see another video from you! As someone who has a cancer gene apart from EDS, I could relate to this video!
@@meahdahlgren5875 Aw, thank you! 😊
@@MillsSkits ❤️🧡❤️🧡❤️❤️🧡🧡❤️🧡❤️❤️
Hi Izzy 😊
I came across your channel recently, as I've been wanting to watch people that make me feel less alone with my chronic illnesses.
I just wanted to say that i adore your personality and you definitely have made me feel less alone.
I as a baby was diagnosed with a mutilated PAX-6 gene. Later in life, I was diagnosed with something that I was told is rare called NEXMIF. I wish that more people would go into genetics in a more investigational of rare genetics where they would try to solve the rare diagnosis that doesn't follow the doctor's textbooks? I hope that you are doing well and I hope that you could make some new videos?
So great to see you again in my youtube videos! I've missed you a lot especially as I found your channel later on in my diagnosis (hEDS and POTS as well as probably others..) journey...
It's late in the night for me, and brain fog is real but it sounded like your next rotation was some way linked with disautonomia and pots...? If I have understood correctly I am so impatient to learn more!.
Love, light, and spoons to you and all those who need them!
Judith
Thanks Judith! The next rotation is on genetic metabolic disorders and lysosomal storage disorders! My cardiovascular genetics rotation is the one with hEDS and POTS...that was my 4th rotation, so keep a look out for that video in the coming weeks/months.
I wonder if you're now using tools for exploring genomes that I've worked on (CWL being one of them)
This is all so exciting and we're rooting for you!
It’s great to see you again! 😎
Hi!!! It’s been so long ❤❤❤ hope you are well!
I am!! Thank you!!
5:49 - I couldn't stop laughing after you said that! That's a phrase I've never heard before, and it just sounded hilarious to me. I have a pretty warped sense of humor after having three different types of cancer. :)
HAHHAHAHAHAHA. The statement sounds so wrong out of context.
this was so helpful! i'm getting brca testing soon and i have hsd:) thank you for all your videos!
Hi Izzy!
I absolutely love your videos.
I want to go down the path of genetic counselling, too.
Do you have a video where you explain how you did it?
How hard it was, how long it's been taking?
Hi!! Super exciting. I have a lot of videos from the last two years on my application experience and tips!!
@@IzzyKDNA thank you for the reply, Izzy, this means so much!! ❤️
Love your videos! I have EDS and a few comorbidities and Birt Hogg Dubé which means I have a mutation on the FLCN gene c.584del and BHD presents with fibrofolliculomas, benign growths in the lungs, spontaneous pneumothorax (lung collapse), and a specific type of kidney cancer. Just thought you’d find that interesting! ❤️
Hey this isn’t the video for this but it’s your most recent 😂 try Solomons Seal salve and tincture it helps with all connective tissues (obviously won’t reverse dna commands ) but it helps me 😅 and it literally cannot hurt
My sister has a Rare Stomach cancer. I wish you could have helped her find it way sooner so she wouldn’t have had to go through the struggles that she had. She has only a sliver of her stomach left and she’s still having to go through chemotherapy. She went to the Sarah Cannon clinic at Sentinel hospital in Nashville for her cancer treatment.
Hi, Izzy! Have you guys noticed elevated anti-carP levels in people with Heds without any other RA indicators?
Hello im wondering do you have Classical eds Or just hEDS
Okay I’m just going to say it, IM THIRD, IM THE THIRD COMMENTER, WOOHOOOOOOO 🥳🥳🥳🥳🥳🥳
Love you!!!!!
Can you recommend a company to get my WGS done with? (VEDS)
I have MS!!!! Lucky me!!!!!!
Also you remind me of Kreayshawn!!!
❤❤❤❤
GENE EDITING i think can be used as a cure .
0:35 - You have a stalker!
HAHAHAHAHAH I KNOW!! 🐈🐈🐈
You should volunteer to be in your school's institutional review board committee (reviewing human subjects research). It looks great on your resume and you learn a lot 😊
Such a cool idea!!! Tbh, this video is soooo late that I already graduated Lmaoooo
You can still ask about being on the IRB. Sometimes they do pay a stipend and honestly it's not a ton of work. The federal regulations require that there's one unaffiliated members on the committee. We had a geneticist on our committee for a while and it was really helpful, especially for research that includes return of results.
@@IzzyKDNA brain fog 🤦🏽♀️... It just clicked in my head that our IRB meetings are all remote lol. If you're ever interested in being on an IRB let me know and I can reach out to our management and see if we might need more IRB members. I work for a university that's one of the top medical schools and we also are one of the highest recipients of federal funding for research 😊