Kaitlyn Keely

Пікірлер

@T3453-ki9ej 2 ай бұрын

My daughter has pten mutation. My husband and I don't have pten mutation. She is four years old. She doesn't speak. She has development delay. what age did you speak? Have you experienced developmental delay? Can you talk about your childhood? Thanks for sharing

@zeynepyldz6374 4 ай бұрын

For baby macrocephaly?learning difficulty? Or what effects does it have on people with this syndrom?

@bojigirl5672 8 ай бұрын

You are amazing!!! I am having surgery to remove a mass from my cerebellum in three days. Your positive attitude has encouraged me. Thank you.

@destinebailey1201 8 ай бұрын

I was diagnosed at the age of 17 and I'm currently 25 and I had over 19 surgeries because of this disease 🙃 I'd love to chat I do have some questions..

@bettyconnearney7943 9 ай бұрын

Sorry you have to go through such a difficult time in your life!! Your so young with a big future ahead of you. I will keep you in my prayers and hope everything gets better for you❤️🙏🙏🙏🙏🙏

@PaulMcqueen-ik7sx 11 ай бұрын

thank you for your story thinking the very best for you paul fom dunedin new zealand

@ericaaubie860 Жыл бұрын

Kaitlyn Keely Gee I can feel your pain.

@shanel2448 Жыл бұрын

You’re my hero! I too had a bilateral mastectomy with reconstruction, My road was hard ! I developed infection , had to have a picc line and have the tissue expanders removed ! Stay strong beautiful lady !

@RMHCS-the-return Жыл бұрын

Love your video. I have it too! My life has been much better since I started rapamycin!

@kaitlynkeely424 Жыл бұрын

That’s Great 😃

@annakorzan2591 2 жыл бұрын

Very intresting story. I had similar one. I also have Cowden syndrom.

@Readitbeforeyrespond 2 жыл бұрын

Hi thanks for comment. I have my LDD surgery in 2 weeks. Have you had it as well? Please write me your recovery steps? Thanks Samy

@zsanettolah 2 жыл бұрын

I love your spirit you are such a kind human being. Glad all went well and you are doing good

@associationsyndromedecowden 2 жыл бұрын

Thanks for this video. I also have Cowden Syndrome. In France, an association broadcasts a video to make Cowden Syndrome known to as many people as possible kzbin.info/www/bejne/iKebfH2hm9KejcU

@associationsyndromedecowden 2 жыл бұрын

Thanks for this video. I also have Cowden Syndrome. In France, an association broadcasts a video to make Cowden Syndrome known to as many people as possible kzbin.info/www/bejne/iKebfH2hm9KejcU

@he1zenberg_exe216 2 жыл бұрын

Hi, my name is Jack, I stumbled upon you on MPL and noticed that I recognized a face I also have a few rare diseases and frustrating health problems and it’s nice seeing someone having a great attitude in spite of those things!(although I’m not sure if that’s current considering that video was about two years ago) God bless, have a nice day!

@Teresa-yk1pw 3 жыл бұрын

Sadly, couldn't get to your blog!

@andreaforro7904 3 жыл бұрын

Impossible to follow this story. Huge lack of info

@CookingAmmi 3 жыл бұрын

R u ok now .I'm still alive 7 years .thanks God .I want to see meet u ..wher do u live

@jordancasciello 3 жыл бұрын

I’m in the UK and I was diagnosed with lhermite duclos also and the Cowdenbeath syndrome after that. I was diagnosed 2 and a half years. It’s nice to see that I’m not alone.

@awetyeman5315 3 жыл бұрын

You are strong.keep the faith.you will get rid of the cow

@nicolet8354 3 жыл бұрын

My story is so.similar to yours!

@꼬밍님 3 жыл бұрын

Hello, I am Korean. I was diagnosed with Cowden syndrome this year. Thank you for sharing.

@anutaphalder 3 жыл бұрын

Only God can Help us to overcome .we should have faith in God.He can do everything With the Stripes of Jesus.I also had brain Tumor,but Jesus Help me to get cured by Chemo therapy.please pray for me.Thank You

@linnsoltwedel 3 жыл бұрын

I am having tests done to se if I have this too. Nice to see someone else who has it and seem good!

@LieingCostsYourSoulTellElders 3 жыл бұрын

Always give to the poor. lots of dangerous chemicals in food including metallic ones. read ingredients. Eat fresh meat, fruit and vegetables never eat anything with salt in ingredients label. Salt is poisoned .never eat fast food or nitrites in bacon and hot dogs. They can cause cancer Always give good food titanium dioxide in candy Sodium aluminium phosphate Never eat bread or baking powder very dangerous

@BLFulle 3 жыл бұрын

My doctors suspect I have Cowden's Syndrome now. Like you, I have a large head circumference, I had thyroid cancer, triple negative breast cancer and now Paget''s disease of the breast. I was told about 2 years ago I had a lymphoma in in my brain, noting to worry about. I have thought about it a lot. I have been a very sick person for 11 years. I'm old enough to be your mom so I have to say, I admire how brave you are. I admire how open you are and how determined you are to do what you need to do. I've seen some of your other videos so I know you've gone through things no young person should ever go through. It's hard enough for me and I'm in my 50's. God bless you. I pray for you that you will not continue to get cancers and tumors. I pray that you will have a normal life and continue to share your story for those of us who feel like no one could possibly understand how we feel.

@audrea5515 3 жыл бұрын

You’re an inspiration

@kaitlynkeely424 3 жыл бұрын

Thank you : )

@wawarisha7939 4 жыл бұрын

U such an amazing person although I may not know u. I'm going to have my surgery up coming too. We all can beat this. Thank u for sharing this. With 💓 and positivity from Distance (Malaysia) GOD BLESS U, UR FAMILIES, those that face CANCER and everyone that read this. Have a Blessing Healthy and Wonderful day ahead.

@emilyswensonbeby9934 4 жыл бұрын

Thank you for sharing. I was diagnosed 15 years ago. (6 surgeries so far, mainly for annoying lumps and bumps and to get rid of a pesky thyroid.).

@grandlordrobert4728 4 жыл бұрын

Earlier Last year I was diagnosed with CANCER in 2019 and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about a herbalist preparing herbal medicines to cure everything type of diseases. including CANCER, at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CANCER and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. They gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 5 months of use, I am now CANCER free, all thanks to Dr. PETER You can also contact this great herbalist for help by email: [email protected] or contact Dr. PETER through his whatsapp number: +2348161615389 He is also specialize in treating all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES EPILEPSY AND MORE ...... He will also be of help to you.

@sarahbentopereira9312 4 жыл бұрын

I was also diagnosed with Cowden Syndrome in September of that year. I removed the thyroid due to the nodules and discovered polyps in the stomach and intestine. So my doctor ordered the genetic test. I am a little (or a lot!) Overwhelmed with the amount of information and exams. Here where I live (in Brazil), the vast majority of doctors do not know the syndrome and are starting to study because of me. And none of them have another patient with this syndrome. It is comforting to see videos and comments like yours to remind me that I am not alone.

@kaitlynkeely424 4 жыл бұрын

You're definitely not alone. Even though it's rare, there are many of us out there. I would suggest you to take a look at Cleveland Clinic here in the USA. They have the top doctors in Cowden Syndrome. I know they have worked with people out of the USA and they can even do the appointments over video and set up a guideline/plan for your doctors in Brazil. I went there to get their advice for my breast cancer. They were AMAZING.... I'm here if you even need to talk, I have a blog at kaitlynslife101

@lovelyjewelss2.0__ 4 жыл бұрын

I too have this disease and found out in 2016 I have the tumor. I too just recently found out stomach is full of polyps. Had one in my colon I simply hate the disease, a life of testing and surgery and other procedures. They wanted me to do mastectomy at 14 years old due to tumors and I said no.

@zeynepyldz6374 4 ай бұрын

How are you now? İ have this problem but i did not do gen test

@mxalfer 4 жыл бұрын

I literally had a pick line too. I was allergic to the stitches so it got infected.

@mxalfer 4 жыл бұрын

I'm 23 and had a tumor in the same place. It took 4 years of dizzy spells before they found it. I have been there.

@Readitbeforeyrespond 2 жыл бұрын

Hi I have my LDD surgery in 2 weeks. Please tell me more about your small brain tumor lhermite duclos deases? Have y had surgery? Thanks Samy

@shontetaylor2555 2 жыл бұрын

@@Readitbeforeyrespond did you have you surgery

@jenniferc.mahaffey7749 4 жыл бұрын

DR HARVEY Herbal Medicine Is Used To Treat Most Complicated Cases Successfully For Over Past 25 Years. There Are Four Different Sugar Coated Which Contain More Than 30 Different AFRICA AND INDIAN Herbs And The Active Ingredients Are Extracted From 100% Pure Herbs Through Modern Technology. Dr Harvey Herbal Medicine Have Been Carried Out Many Scientific Laboratory Assays In UK, USA, Germany, Japan And Namibia. We Have Herbal Treatment For Lower Immunity Related Diseases Like •TB, •ANEMIA, •HIV/AIDS, •CANCER {ALL TYPES}, •EPILEPSY AND SEIZURES, •ASTHMA, •ARTHRITIS, •MUTATED CELLS{TUMORS,POLYPS,WARTS}, •CHRONIC PAIN, •DIABETES, •HBV [HEPATITIS A.B.C] AND HSV [HERPES VIRUS] INFECTIONS Etc. ,, Message us on WhatsApp on +2348108268782 [email protected]

@jenniferc.mahaffey7749 4 жыл бұрын

@ltrevethan7964 4 жыл бұрын

I go in for a week nov 3rd

@elizabethbrogan6582 4 жыл бұрын

I have Cowden's too! Talking about it scares me, but it's a comfort to put a face to other people like me.

@kaitlynkeely424 4 жыл бұрын

Completely understand. - I'm here if you ever do want to talk. I have a blog at kaitrlynslife 101

@daysfanatic0407 4 жыл бұрын

I was recently diagnosed with Cowden Syndrome. All of my life I've struggled with looking different from my large head to my venous malformations but now everything makes sense and I can get all the appropriate screenings I need. Best wishes from Boston.

@margaritalopez6274 2 жыл бұрын

You live in Boston ? I have the same diagnosis I don’t know anybody with this rare condition.. I live in Boston too

@zeynepyldz6374 4 ай бұрын

For baby macrocephaly?learning difficulty? Or what effects does it have on people with this syndrom?

@jelleknuts8071 4 жыл бұрын

My boyfriend has this They Said it yesterday :(

@kaitlynkeely424 4 жыл бұрын

Jelle Knuts Very sorry, definitely is a hard life but I hope my story can be inspiring.

@grandlordrobert4728 4 жыл бұрын

@mjabulelwazondi5209 4 жыл бұрын

I studying for my Registrar(residency ) for Radiation Oncology.I learnt a lot from your video.

@kaitlynkeely424 4 жыл бұрын

That’s Great - Glad you learned a lot from my video:

@jesussaves1827 4 жыл бұрын

To everyone reading this please turn to Jesus He loves you and wants to save you, He is the God of miracles The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, He can do the same for you, In your darkest hour call on Him, God saved someone I love from an illness leading to death, There is nothing impossible to God Its as simple as asking Jesus into your heart to be your personal Lord and Saviour, Jesus will answer you, I know this because it happened to me when I called out to God

@asdf3po576 4 жыл бұрын

My wife has this as well. I notice my 3 year son has a learning delay. would having a large forehead be a sign as well?

@elainekommenge1157 4 жыл бұрын

Thank you for sharing your story!

@TheNinasosa 4 жыл бұрын

I go in next month on the 10th

@TYS2023 4 жыл бұрын

When you have only a mutation and not a classic braca1 positive,will This make you remove your ouvaries like what Angelina Jolie did..I have triple negative breast cancer .thanks to answer your questions

@kaitlynkeely424 4 жыл бұрын

Not ovaries, because PTEN effects (high risk) for uterine cancer. I would be able to keep the ovaries and that is suggested to due with the hormones. I’m only 28, so for now I am just keep my eye out on any thing unusual.

@melissa-kt7qt 5 жыл бұрын

Have cowdens syndrome watched this from south Australia

@kaitlynkeely424 5 жыл бұрын

Hi 👋- melissa beercan - thanks for the comment, welcome to my channel. I have a blog at Kaitlynlife101. kaitlynlife101.wordpress.com 💚😄💪🏼

@marilynbarker8255 5 жыл бұрын

These doctors who disregard symptoms without thorough examinations are unforgivable.

@mxalfer 4 жыл бұрын

It took me 4 years to find a tumor because of this.

@natasharam3187 5 жыл бұрын

my friends 2 daughters both have it. they are only 2 and 3. Thanks for sharing I will show her this vid.

@kaitlynkeely424 5 жыл бұрын

Natasha Ram - sorry to hear about your friends children. Thanks for sharing my story with her, I really appreciate it. 💚💙💚💙💚

@jesussaves1827 5 жыл бұрын

To everyone reading this please turn to Jesus He loves you and wants to save you from the pain you are going through, Only Jesus can truly heal you, He is the God of miracles, the bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, I seen God do amazing things in my life and in the lifes of people I know, God saved someone I love from illness leading to death, There is nothing impossible to God, Its as simple as asking Him to show you He is there and if you really want to know Jesus will answer you, I know this because it happened to me when I called out to God

@princessash032587 5 жыл бұрын

I had a breast cancer scare I’m so sorry now there’s a pin in my breast. From a biospy. They want me to see a surgeon and have it removed. But I’m going for ultra sounds every 6 months and mammograms. I have a Fibroadenoma. I’m so sorry.

@kaitlynkeely424 5 жыл бұрын

I’m so sorry, that you can relate to my story. That’s very interesting and also concerning that they wanted to remove the clip, they are there for a purpose. So if they need to go back and do any more biopsy, then they know which areas they have done already. Well, on the other hand. I’m glad your on top of everything. I have met so many women, with in these past few years that they went to the doctors concerned about a very small lump, the doctors were not concerned. Until they came back, because it grew/causing more issues. If you don’t mind asking do you have a high risk to develop breast cancer, like the BRCA ( 1 or 2) for example. Just curious because for me, I have a rare gentic condition known as PTEN, also have a video on that.

@kaitlynkeely424 5 жыл бұрын

princessash032587 princessash032587 oh okay, yes that totally makes sense. When you get a lumpectomy out, the clip come out like having a double mastectomy. Sorry, about it confusion. My comprehenion is slower/confised/lost most of the time. Glad your bot at high risk, I’m always here if you would like to talk/support.

@princessash032587 5 жыл бұрын

Kaitlyn Keely thanks

@Locomattive8572 5 жыл бұрын

My dads had a brain tumour on his brain stem that has been found out to be a Cowdens tumour. Cambridge university have been looking at it and published result in the BMJ. As brain stem Tumours hadn’t been associated with cowdens before. It’s know area for checking patient when they have cowden Related checks.

@kaitlynkeely424 5 жыл бұрын

That's very cool, we have been trying to get my doctors to write something. Especially, my epilpsey Dr. Thanks for leaving a comment, connection to cowden. I really appreciate it, I also have a blog at kaitlynlife 101

@Locomattive8572 5 жыл бұрын

Kaitlyn Keely cool I’ll give it a look. I’m lucky I don’t have it, but my sister has a small brain tumour and my nephew has just been diagnosed too. Cowdens ripped my family apart as sadly it killed my great Aurnt, grandad, dad and Aurnt, but this was before it was known about in the family. My cousin has it too. With it being known about in the family however, my family are in a much safer place these days. Keep you the work.

Ең жақсы KZbin

Пікірлер