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21 күн бұрын
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Пікірлер
@goodone5590 Ай бұрын
Seriously....? No comments man what the...
@itrulyarmi1106 2 ай бұрын
I have two in my spinal cord Hemangioblastomas and I am terrified. I have had Pheochromocytoma twice
@Kathyyam 2 ай бұрын
🙏🙏
@Kathyyam 2 ай бұрын
🙏🙏
@AmyBrown-m3f 2 ай бұрын
Welch Rue
@ObadiahGabriel-k4s 3 ай бұрын
47060 Klein Dam
@BartlettMadge-o9z 3 ай бұрын
Walker Lisa Wilson Maria Hernandez Shirley
@BartlettMadge-o9z 3 ай бұрын
Harris Helen Taylor Nancy Taylor Linda
@KonaAktar-t7h 3 ай бұрын
Martin Elizabeth Thomas Cynthia Perez David
@KonaAktar-t7h 3 ай бұрын
Lopez Carol Robinson Elizabeth Martinez Margaret
@realmatrix123 5 ай бұрын
Danke
@Digital-rubel 6 ай бұрын
A very nice video thank you mam I always watch your video I can learn a lot by watching your video your video is very nice you have 119 videos on your KZbin channel I am watching all of them
@RohitSingh-kj1wt 7 ай бұрын
Can you state aveage life of a person suffering from VHL. I a patient my self, Hemangioblastoma in ceberal, tumaor in both the kidneys .
@puhelimentili805 10 ай бұрын
Absolutely...
@simonemelo9604 Жыл бұрын
Amém Senhor ❤❤❤
@simonemelo9604 Жыл бұрын
Um sonho ❤❤
@simonemelo9604 Жыл бұрын
Esse medicamento parece um sonho ❤❤❤
@1autoneurotic Жыл бұрын
My family, myself in particular have been Dr.Chittis patients no multiple occasions. He inspires confidence by him understanding what is going on us healthwize. My mom Charlotte and my aunty Myra’ along with the rest of family hand on there every word.
@dynarmin Жыл бұрын
Hello, I have a question regarding your video and the process of mutations. As far as I know, VHL Gene is located at chromosomal position GRCh37 3:10188322. What is the wild-type allele for humans without a mutation? And what allele mutation has to happen there?
@payel12 Жыл бұрын
Hope I had the money to meet you and know more about Neuroendocrine cancer .
@Newday1187 Жыл бұрын
Great work, well presented, very informative lecture.
@carmenreyes5031 Жыл бұрын
Hola sería tan amable de enviarme el correo de la doctora
@PMHandymanServices Жыл бұрын
Dr Chittiboinia and NIH are fantastic!!
@dbrown2728 Жыл бұрын
I just had surgery to Have 1 hemangioblastoma removed in R cerebellum. It has been about a month. Do you have a friend or family member you May bring w you and to help some when you get home? I am happy to answer any questions; if you want to ask anything. BTW, I am 65. You will want to sleep some days a lot because your brain is healing. Sleep. I used ice packs to cool the incision area. I promise you will be ok
@brian9383 Жыл бұрын
How long did recovery take for you?
@evabeth41 Жыл бұрын
So how do I tune into the tumor board? I'm at a loss as to what to do in my situation. EXTREMELY OFF BALANCE. Had cerebellum tumor removed a year ago and am getting worse as each day passes. Need help!
@vhlfa Жыл бұрын
We're sorry to hear this! The Tumor Board is currently only open to medical professionals. The best thing to do is ask your doctor to present your case.
@mahoni27 Жыл бұрын
I took the 2nd dose of welireg 40 mg today, 3 times a day, 90 in a month. There are no side effects at the moment, I feel very well.
@mako7796 Жыл бұрын
Geçmiş olsun Mert, Seninle iletişime geçebilirmiyiz herhangi bir yerden
@margaretpearl-ff4vb Жыл бұрын
Praying for all the patients complete good health ❤may they find the cure soon🙏🥹
@margaretpearl-ff4vb Жыл бұрын
Praying that all the patients may get cured 🙏may they find the solution soon🙏
@leslieporter3350 2 жыл бұрын
ᑭᖇOᗰOᔕᗰ
@luvmykids1970 2 жыл бұрын
I’m experiencing hypoxia I am currently on oxygen.
@kathys1701 2 жыл бұрын
If a patient takes home oxygen therapy due to Hypoxemia, does the Belzutifan still work? I was going down to 64% - 85% Pulse-Ox, so I am now on home oxygen so I can take 120mg.
@antoniothomas9830 2 жыл бұрын
I am happy to share to the public and to let everyone know about #drodia on KZbin who has the most effective medicines for Herpes Virus.😊😊😊
@antoniothomas9830 2 жыл бұрын
I am happy to share to the public and to let everyone know about #drodia on KZbin who has the most effective medicines for Herpes Virus.😊😊😊
@augustinmay674 2 жыл бұрын
Hi VHL Alliance! Could you give me some help on how to get Welireg, I am diagnosed with VHL and that`s my only hope. Could u pls help me and give some info. I`m not a US citizen and not live in the US, so I have to contact a VHL doctor or hospital first so that I can leave for US to get treatment and prescribed. Could you give me some help and I am really desperate. Thanks you!
@richardpralle6722 2 жыл бұрын
Thank you so much for all your efforts and successes. Keep up the great work and God bless you all!
@arberberisha8260 2 жыл бұрын
Does this work on spinal tumors? I've 2.3mm tumor in t3 t4 and I'm stuck with it I can't walk but I have good feeling on both of my legs and I also can move both my legs a bit but operation is to dangerous and radiotherapy didn't really work either pls let me know thanks
@vhlfa 2 жыл бұрын
The research shows that it does have an impact on VHL-related hemangioblastomas in the brain, spine and retina. The FDA approved the use of Welireg (belzutifan) for those indications, as well as VHL-related RCC and pNETs. The best thing to do is to talk to your VHL physicians to see if you are a good candidate.
@arberberisha8260 2 жыл бұрын
@@vhlfa I've heard something about it but Belzutifan is unfortunately not available in Netherlands so I thought maybe people there are people who had same experience. Thank you for answering I'm really looking forward to it hopefully European Union will approve it as soon as possible I don't know why there can be a issue if FDA has already approved it
@sachinmalee9039 3 жыл бұрын
Recently I'm diagnosed with hemangioblastoma. I'm scared of surgery 😭
@udaykumar879 Жыл бұрын
Can I have u r num Can we talk?
@dbrown2728 Жыл бұрын
I was scared , too, but it was ok. I did not even know what to ask the surgeon.
@misschardon.92 3 жыл бұрын
I have this and not long lost my mum to it. I’m the only child and have no children myself although that would be a dream come true. I’ve stopped this horrible illness it’s true it really is life changing and I pray to have a cure ♥️
@caseyskillicorn1435 3 жыл бұрын
I have VHL, we do not suffer with this disease we live with it and manage it
@Pat7629 3 жыл бұрын
She was my oncologist at Dana Farber after being diagnosed with testicular cancer in 1992. She is one of the most amazing human beings I've ever known. Her positivity, support, compassion and encouragement helped me get through that very difficult time meant the world to me.
@MRRandykeaton 4 жыл бұрын
Very Good Information, And I'm very glad to call him my Doctor, And it's very important to have a care team and Knowledge of your condition.
@Kathyyam 4 жыл бұрын
Great appreciate it
@taniyasyed7086 4 жыл бұрын
I have vhl disease
@ceydafiliz9265 5 жыл бұрын
Bu videoyu izleyen Türk vhl hastası var mı?
@jgrif690711 6 жыл бұрын
Thanks for sharing, what strength courage & hope. Sorry for your loss.
@kurtiwaniuk 6 жыл бұрын
Miss you Julie.
@cali4nia9style63 7 жыл бұрын
I have some serious question cap you please reply?? thank you
@hagarkhallaf991 7 жыл бұрын
Jeanne you are a role model too, best wishes in your life. God be by your side. 💙
@nicholaswilliamobrien2451 8 жыл бұрын
Jeannie is a very well spoken and dignified lady! Well done
@LylyBennett 8 жыл бұрын
Not an easy thing to live with. My mother has it, as well as 2 aunts and 2 cousins (and didn't get to know my grand-father who died of a brain tumor). Luckily, I got spared but it isn't easy to watch relatives struggle with it. Kinda sad that so many people have no idea it exists.