Cystic Fibrosis Clinic: Genetic Counseling Student Clinical Rotations

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In this video, I vlog about my experience in my first clinical rotation: cystic fibrosis clinic! I'm currently a second-year genetic counseling student at the Icahn School of Medicine. During the program, we rotate through 8 different rotations, and cystic fibrosis is my first one. Stay tuned for others like cancer, cardiovascular genetics, and lab. Let me know if you like tagging along because I'm hoping to film each of these rotations :)
Please note that some details may be altered from real-life circumstances. Complete patient privacy is always my main priority.
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📸 Instagram ▶ / izzy.kornblau
⏰ TikTok ▶ / izzyk_dna
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#cysticfibrosis #geneticcounseling #medicalstudent

Опубликовано:

21 авг 2022

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Комментарии : 67

@c.a.1506 Год назад

I don't know how feasible this is for you, but I'd love it if one day you addressed EDS misconceptions specifically regarding darker-skinned people since some of the criteria (e.g. translucent skin, scarring, bruising, etc.) will look different on darker skin and it's something that serves as an additional barrier to entry and diagnosis. again, not sure if this is something you could actually do since I'm sure finding EDS-diagnosed poc in your area who would be willing to collab on a video with you would be very difficult (given how underdiagnosed it is in general, let alone amongst poc), but if the opportunity ever arises I'd love to see it!! anyway, thank you for taking us along for your clinical rotation 🥰

@kikitauer Год назад

I mean you probably already heard of her but I would really recommend the work of Claire Wineland. She made several deep philosophical videos about life in general among many other thing. She was one of the top advocates for CF.

@meahdahlgren5875 10 месяцев назад

❤❤❤❤❤❤❤

@penelopepolinsneemeyer4757 Год назад

This is fascinating, Izzy. I came across CF patients when I did my pædiatric rotation as a student nurse back in 1986. I’m so glad that the outcome for CF patients is so much better now. It’s lovely to see you again! xxxx

@ahumanyoudontknow5777 Год назад

I've been watching you for years and it's so cool how much you have achieved!

@IzzyKDNA Год назад

Thank you so much 🥺❤️

@tamberjune Год назад

I've been to a couple genetic counselors and gone through sweat tests and have a bunch of cf symptoms but no formal diagnosis yet. It's not fun because I don't qualify for a Vest and I feel like I'm drowning. Also, not being able to eat much when you have to eat all the time sucks! I'm so glad you can help. I'll bring up the cf-like stuff to my doctor's and my immunologist just asked for approval for genetic testing since I haven't had any for 15 years. So praying we get an answer! This disease is complicated! My pancreatic ducts are messed up and I take enzymes all the time cause I have to eat all the time! I love the frey Life as well. They've helped me a lot with coping and understanding and not feeling alone! Go Izzy! So proud of you!

@IlivebcuzHelovesme Год назад

I was just thinking that it had been a while since you posted, then just a few hours later here you are with a great new video. Glad you are doing well.

@IzzyKDNA Год назад

😂😂❤️❤️

@stacyshirrell11 Год назад

Glad your doing well and living life.

@charlotte_noelle Год назад

YAY! Great to see you living your dream Izzy❣️

@ariemhetareads3996 Год назад

I really like the way you put together this video.

@ABLovescrafting Год назад

I did find this interesting! Keep sharing!

@lovedfriend2020 Год назад

Nice to see you again Lzzy :) Miss seeing you.

@wryn.is.trying Год назад

I really enjoyed the video, and would love to see videos of your other rotations!

@alexmusic9664 Год назад

This is so interesting. Please continue making videos like this one

@joanneduval5532 Год назад

I’m so happy for you. You are amazing. I love all your posts. They are so educational. CF is so scary. I’m happy you are living your dreams. ❤️

@leslietascoff9784 Год назад

This was a fantastic video! I have wondered how you’ve been doing. I hope you’ll always keep making videos! 🙏🏻❤

@alona270 Год назад

Woowww!!!! So amazing to see your study progress! Omg you are sooo great! Soon to help many more

@lizdowning6134 Год назад

Glad to see you back. I’ve been following the FreyLife for years so really interesting to see you do a CF video.

@gamewrit0058 Год назад

Yes, I'd love to see and hear more about your rotations! Thank you so much for this informative, respectful, and compassionate video!

@Unashamed832 Год назад

I enjoy your enthusiasm. You make genetic counseling interesting and informative for the lay person. Than you so much.

@pamelamartin8464 Год назад

I'm so happy for you. You are dedicated and achieving your goals. So much respect for you.

@IzzyKDNA Год назад

Thank you so much! ❤️

@adamguymon7096 Год назад

This is great that you are doing this. I am so proud of you. I watch the Fray Life channel I love that channel. Congratulations and keep up the good work and please post more videos I have missed your videos.

@rheagalarneau1366 Год назад

Hi Adam, it’s Rhea from “The Gala Sisters.”

@arieldacruz2044 Год назад

Super interesting stuff! I remember my younger sister being tested for CF as a toddler and how scary that was for my parents. Thankfully, everything came back negative.

@bappamukherjee-gc3qg 11 месяцев назад

Your diagnosis is good.

@Mary-Sigrid Год назад

Your content is so informative and entertaining and it would be really cool to hear about your other rotations! Great to see you get to work in a field you‘re so passionate about!

@IzzyKDNA Год назад

Thank you so much!!!!

@tracywright1660 Год назад

Interesting that you are learning about this. My son has CF, he’s 9. I have been interested EDS for a long time and found you through Jackie. Small world

@ParodyGuy2024 Год назад

You got this!!

@rheagalarneau1366 Год назад

Happy to see “The Frey Life” in your video.

@morganeb2403 Год назад

This was great! I'd love to follow along this journey you're going through if you post more of these! And I'd also like to say, I'm so grateful for your channel. I stumbled upon it awhile back and started realizing why I was in so much pain and why my scapula was popping out of place so I pushed for a genetic consult and I do have hEDS on top of the Chiari Malformation and migraines. Your channel really gave me a sense of community and strength to push for my diagnosis and to get help so thank you so much ♥️

@IzzyKDNA Год назад

🥺❤️❤️

@hjcdormouse7337 Год назад

Wow that took me back to working many years, ago with CF patients. I loved it they became friends as we got to know them and their families so well. I look back now and am in awe in how far science has progressed in management of CF. CF is hard slog but the one thing I would always say to those going thro genetic testing or recent diagnosis there is realistic hope of ever improving outcomes. I have seen the huge difference in life quality and expectancy. I am so glad you enjoyed rotation. As ex nurse going forward career wise I would say get a broad general base first, even if it means moving posts, then decide on specialist area as you will find that time spent as a Generalist priceless as when stumped at knowing something wrong but can't pin point from depths of expireance a spark will flicker and light bulb moment occurs as you have had a wide General Base.

@IzzyKDNA Год назад

Thank you so much for the advice! And I’m so glad this took you back in time for a few minutes!

@user-hl9vu6ij2r Год назад

Hey Izzy! Happy to see you learning and having a good time doing it! Any great resources you guys are using for patients with elevated sweat chlorides, metabolic symptoms, and no pathogenic CFTR variants (or VUSes)? CRMS seems a bit contested?

@judithlashbrook4684 Год назад

Really great to hear from you after so long! I was wondering what you were up to and I'm glad to see that you're busy and happy in your studies. It also felt good to hear about another medical condition other than mine (probable hEDS, POTS...) although I'm still here for that too of course! Will one of your rotations be along those lines or do you/the school rather students don't deal with patience that have the same condition as you?

@IzzyKDNA Год назад

Thanks for asking! So we have a cardiovascular genetics rotation which includes patients with hEDS and other types of EDS!

@Rain_Reign Год назад

I was diagnosed with hEDS last month and in my effort to educate myself and find my community I discovered your channel. Thanks so much for everything you do related to EDS, and it’s also so cool to see part of your career journey. Genetic counseling sounds fascinating and rewarding, and I could see myself enjoying it in another life (I ended up as a bird biologist). I definitely have my eye out for your next video!! 🦓♥️

@susannunemaker4262 Год назад

Hi Izzy! So good to see you again! This was very interesting. I have a step daughter with cystic fibrosis. She received a double lung transplant 22 years ago. She is now 50, married with 2 adopted kids and is an RN as well. Our youngest is seeing a geneticist now (different issue). Your videos have helped me learn a lot of the vocabulary which was very helpful. Best of luck with your education!😃

@shannongreenwell1278 Год назад

At our DHS office one of the workers there has family who has cystic fibrosis. They did a awareness about it on Touched by an Angel. The person who played the mother to the child who had CF was Wynnona Judd.

@smilingiscontagious709 Год назад

Hi. I love all your videos! I have pots and follow you. I have a questions I don’t remember what video you mentioned it in so I will take a shot that you may see this comment. What was the nutrition tracking app you used to show how many nutrients you were getting?

@dutyofcall7659 Год назад

I had a severe asthma attack caused by a previous lyme disease infection and ended up in the hospital were they checked me also for cystic fibrosis with the sweat test which came back negative luckily.

@k.a.kaufmann770 Год назад

I have been following you for almost two years and have learned so much! Thanks for sharing your life and experiences with us. It was wonderful seeing you in this new role, after you worked so diligently to get there! I would love to see more of these videos. We have a family friend with CF and he is now on Trikafta and is doing great! I’ve been watching The Frey Life for almost five years. I “found” them when their channel came up on my algorithm when Mary got her J-tube!! I have such respect for all of you who develop content that educates and supports other! I want you to know that it was one of your videos which convinced me to seek a formal diagnosis of hEDS. I’m 51 and have been dealing with EDS and all it’s comorbidities my whole life. Unfortunately, none of my specialist even thought my chronic illnesses could be due to a HCTD, let alone suggest that I be tested for genetic conditions. I’ve known for over 3 years, and now my doctors do too. My geneticist was incredible and I finally know why my whole body has literally fallen apart! Thanks you Izzy! You are going to be a great genetic counselor 😊

@IzzyKDNA Год назад

Thank you so so much! ❤️❤️❤️ and I’m truly so glad that my videos reached you finally know the name to your chronic illness

@tamberjune Год назад

I think she'll be great too!

@VulcanOnWheels Год назад

It has been too long! 😀 2:23 I know the Frye Life. 9:18 I know it's off topic, but I do suggest you process that update your computer's reporting. Also, thank you for letting us see this website.

@dumptydo Год назад

Hi! I was wondering if you are still taking Duloxetine - and if not why? My daughter has EDS and we are looking at what can help. Thanks in advance!

@gioelecentonze203 Год назад

Hi Izzy, I hope I'm not bothering you! In your opinion, doctors could find a cure (for EDS) using the "crispr-cas9" technique?

@liamodonovan6610 Год назад

You are amazing Izzy you will be awesome at your job this video reminds me of the beautiful goddess claire wineland i miss her so much love you so much izzy awesome intelligent video video

@IzzyKDNA Год назад

Thank you so much. And omg she was a queen!

@lynnbrooklyn1332 Год назад

Thanks for posting! This was a very informative video. I didn’t realize that ashkenazi Jews population had that much of a problem with genetic disorders. Though I think every population has its own sets of issues. Would love to see more vids like this..

@teirahgreen4750 Год назад

I was wondering if l can have that link to check on the combination of CF genes ? Im not sure though if it was public or not. I was told at the age of 35 in 2008 that l have 2 genes R117H and V520F. I found out after the hospital did a heal prick on my 3rd child. She had a sweat test and is only a carrier and the genetics clinic asked if they could test myself and partner which we agreed. A few weeks later l got a call from the genetics clinic saying l have CF and l was then sent to another clinic for more test . My father was with me too so they asked if they could sample his blood and he agreed so l do know l got the worse gene from him and the milder one from my mum. Ive never had any symptoms and lm supposed to go every 2yrs for check ups but l dont. My only sibling was told he should be tested too and he had the same as me. He's passed away now from a brain tumour but struggled on and off from childhood with asthma . I had it on and off as a child too but grew out of it. I feel bless that lm ok especially after being so stupid and smoking for 30yrs . Can you tell me with my combination is it ok ? My specialist told me years ago some have symptoms with that combo and some dont however she said they are still learning all about it and each year they have more information. 🇦🇺 Update. l found the website. 😁

@yomama8873 Год назад

Best wishes enjoy 🤩🤩🤩💖💖

@bappamukherjee-gc3qg 11 месяцев назад

Hi Izzy good afternoon, as a doctor, u may seen & will be seen some case study of patients, gather some knowledge & experience.

@escape2064 Год назад

Do you still take duloxetine

@shannongreenwell1278 Год назад

Could you please do a video about Cerebral Palsy, I have a dear friend who has that. And could you possibly do one about Epilepsy, I have family that has it. I have found out that my parents are the reason I have EDS and Epilepsy.

@dRed1001 2 месяца назад

My son (10 years ago) had 2 sweat test that were “in the grey zone”. He was puzzling to doctors because he had no mutation or deletions…his bloodwork was sent to Ambry testing and John Hopkins and they found nothing. Dr says no CF (I’m thankful), but I’m confused as to why he has such an elevated sweat but no mutations or deletions. From your research what have you found about those that have grey zone sweat test but nothing in DNA that indicates CF.

@ronjalag9710 Год назад

Will you be learning about conditions like multiple endocrine neoplasia and other tumour disorders ?

@IzzyKDNA Год назад

Yes!!! I’ve already seen a patient with MEN1/2 in my cancer rotation. ❤️

@ronjalag9710 Год назад

That’s so cool, Within the last 12 years, ( since I was 14) I’ve been diagnosed with thyroid cancer, a pituitary adenoma and now under investigation for a gastrinoma as my entire upper gastrointestinal tract is eroding despite PPIs. They are thinking something like MEN although I had papillary not medullary so they are not sure, but some kind of tumour disorder anyway. It’s scary but also extremely fascinating ❤️

@kevinray2708 Год назад

Have you ever had anyone in your family that had polio ?

@jeffward3680 Год назад

As a Father of a 14 year old girl who is going through the process of being diagnosed with Hypermobile EDS. I feel a bit of sorrow because my wife and I went through so much genetic testing and counseling to verify the chances of Her passing on her muscular dystrophy. Only now to find out she is going to passably have her own life long issues. So just remember that just because they have one issue dose not mean others might run in the family.