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Acromegaly Community
Приєднався 12 бер 2014
OUR MISSION is to provide an emotional and communal support network for people touched by Acromegaly. We offer a central location for medical information on issues including surgery, medication, radiation, and post-diagnosis support. Most importantly, we work to provide a network of emotional support and education for our Acromegaly patients, their friends, and their family.
Acromegaly Community hq- Awareness about the community 1080p
Awareness about Acromegaly Community
Переглядів: 401
Відео
Acromegaly and Pregnancy with Dr. Kevin Yuen and patient advocate Kelly Johnson
Переглядів 955 місяців тому
Learn more about acromegaly and pregnancy. It can happen, especially if your condition is well managed.
Navigating Insurance with the PAF Foundation
Переглядів 226 місяців тому
Navigating Insurance with the PAF Foundation
Navigating Medicare with the PAF Foundation
Переглядів 276 місяців тому
Navigating Medicare with the PAF Foundation
2024 Acromegaly Overview, Dr Kevin Yuen
Переглядів 5928 місяців тому
Acromegaly Community and Barrow Neurological Institute proudly present Acromegaly Overview.
2024 Secondary Adrenal Insufficiency, Dr. Kevin Yuen
Переглядів 1,1 тис.8 місяців тому
Acromegaly Community and Barrow Neurological Institute are proud to present Secondary Adrenal Insufficiency
2024 Dermatology, Dr Hershel Dobkin
Переглядів 3658 місяців тому
Acromegaly Community and Barrow Neurological Institute are proud to present Dermatology.
2024 Live Pituitary Surgery, Dr Andrew Little
Переглядів 1 тис.8 місяців тому
Acromegaly Community and Barrow Neurological Institute proudly present Live Pituitary Surgery
2024 Acromegaly AI Project, Dr. Michael Cusimano
Переглядів 2388 місяців тому
We need patients to help in this important project. Please join us today in trying to help find ways for earlier diagnosis!
2024 Surgery Overview, Dr Andrew Little
Переглядів 2158 місяців тому
Dr. Little Explains what we will be seeing within the live surgery
2024 Headache Expert, Dr. Kerry Knievel
Переглядів 2138 місяців тому
Acromegaly Community and Barrow Neurological Institute proudly present Headache Expert Dr. Kerry Knievel.
2024 Emotional Support, Catherine Jonas
Переглядів 848 місяців тому
Acromegaly Community and Barrow Neurological Institute are proud to present Emotional Support
2023 Rheumatology, Dr. David Clemmons
Переглядів 2438 місяців тому
Acromegaly Community and Barrow Neurological Institute are proud to present Rheumatology in Acromegaly.
2024 Radiation Oncology, Dr. William Kennedy
Переглядів 3718 місяців тому
Acromegaly Community and Barrow Neurological Institute are proud to present Radiation Oncology.
2024 Weight Management, Dr. Tirissa Reid
Переглядів 3378 місяців тому
2024 Weight Management, Dr. Tirissa Reid
2024 Sleep Neurology, Dr. Joyce Lee-Iannotti
Переглядів 3158 місяців тому
2024 Sleep Neurology, Dr. Joyce Lee-Iannotti
Dr. Lillehei- Acromegaly Surgery History and Overview
Переглядів 90Рік тому
Dr. Lillehei- Acromegaly Surgery History and Overview
Speaking To Your Provider Effectively- Christine Yedinak
Переглядів 104Рік тому
Speaking To Your Provider Effectively- Christine Yedinak
Nutritional Help In Balancing Hormones- Jessica Thomas
Переглядів 259Рік тому
Nutritional Help In Balancing Hormones- Jessica Thomas
Navigating Mental Health Challenges- Catherine Jonas
Переглядів 71Рік тому
Navigating Mental Health Challenges- Catherine Jonas
New Techniques in Neurosurgery- Dr. Karam Asmaro
Переглядів 95Рік тому
New Techniques in Neurosurgery- Dr. Karam Asmaro
2022 Acromegaly Patient Education Day- NYU
Переглядів 942Рік тому
2022 Acromegaly Patient Education Day- NYU
Introduction to our community. November 2022
Переглядів 362 роки тому
Introduction to our community. November 2022
This was great info!
Hi!! Could you please talk about mild Acromegaly? The diagnosis , treatment and surgery. Microadenomas, mild elevated numbers, and physical changes.
Thank you so much!
Commentary starts at 5:00
I'm glad y'all are making use of utube, Facebook isn't for everyone, keep going,🎉
I am having burn in my checks, up my head , jaws and teeth gums. When my hormone is in range.
Just letting you know, my A1C range was 6 to 7. Peripheral neuropathy started. I paid for a freestyle and i was having meal high jumps BS to 260. I started on insulin to stablize my BS. Just saying lab vaules may be normal for medical need but symptoms say no.
Muscles are weaker, causing falls, and easy muscle damage. Not all the symptoms are listed.
Does anyone have nerve tingling in the tongue, cheeks or head?
I do, in my my whole face
@@yenyp4147 me too. The tongue too. The medical community does not have an answer.
This is a wonderful program. I was able to get 5000 grant for my acromegaly. I was able to start somavert this year. I have Medicare with a prescription policy and gap. now catastrophic as of 6/1 and all my meds are 0 co-pay, until 1/2025. I hope i can get another grant. Somavert cost is so high- 12,000 amount with no insurance. This program was a lifesaver for me. ❤
How do i get in contact with Dr. Karl?❤
Good basic information
🤗 'promosm'
Thank you 🎉
So in 2021 I was diagnosed with acromegaly. I have clubbing of my hands and feet . I consistently have high IGF1 and High IGF2 however my endocrinologist thinks that my hands and other parts of me should be affected more then they are. She does not think my pituitary tumor is growing at the rate it should? And now she thinks my pituitary tumor was an incidental finding and that something else is to blame for the extreme exhaustion, over heating, clubbing of my hand and feet, and high IGF1 and IGF 2 . Has anyone else ran into this issue? I did the growth hormone suppressant test and my IGF 2 was high initially prior to the glucose drink. However it did drop with the glucose to normal.
Where can I access the video from Ignite?
I was diagnosed with severe sleep apnea 15 years ago but had likely had it for 20+ years. I do not fit the usual profile for OSA in any way. I suggest that pulmonologists perform a screening test for acromegaly in patients who do not fit a typical OSA diagnosis.
Nicely done explainer!
❤️
I have found a loss group in Everett clinic ran by a phd. Perfect, she says when I am fatigued do not beat myself over it, but take a nap and cherish yourself.
I have found a loss group in Everett clinic ran by a phd. Perfect, she says when I am fatigued do not beat myself over it, but take a nap and cherish yourself.
Many Thanks for this presentation. in the Middle East we only have Sandostatin and I don't think we will get any new drug soon for many reasons but I am really happy to learn about the trials and new drugs as a Pharmacist (and for sure as an Acro fighter)
Thank you guys this is really great :) regards from Dubai
I love when Dr. Catherine said that you have to educate your therapist about Acromegaly hahah this is so true :) Thanks all for the efforts and the upload :)
I think all acromegaly patients need to be in psychology care.
Grief is the issue with acromegaly. I needed help to figure it out to cope with my symptoms. I am in a loss group directed by a psychologist PHD. Grief is in stages and it is ok, I suggest reading Dr Elisabeth Kubler Ross book on grief. In my group a lady with MS has fatigue too. She said if she is on the couch and weather permitting she will get up and sit on the deck listen to the birds. My psychologist says not to beat yourself up over fatigue and take a nap or read a book. Self care is good.
Grief stages is what I go through. My acceptance of the disease is getting better. The fatigue happens and my psychologist tells me do not beat myself up. I am told to Take care of yourself and take a nap or eat something good for you. Compassion for me is good.
🤷🏼♀️🤔 Okay your video I watched before was not as daunting as this one I fit in the compassion fatigue but not like not caring for anyone no I still care and too much Im not a Sis stance abuse or alcohol I want to learn all the time! But other parts of this is so right own room the way I feel just not wanting to hold everyone responsibility anymore Not wanting to be there constant care taker so to say I feel like I have sucker written across my forehead As every time I help someone it’s line no gratitude no care for me or what I’ve done I mean I don’t hurt others by thinking they are not as hurt as me I want to know others like me that will give love and compassion when I need just as I’ve given always to them? All around me is takers and I’m so tired I wear myself out just line you said doing for others I do cry at the drop of a hat now I feel like I’m completely overwhelmed But never have I ever thought I was better than done it that there Problem ms could be not worse then mine No way I keep my head realizing that others problems are harder than mine and ti keeping pushing So I’m not sure why the other video you smoke of your mom and your attachment due to fear of hurt from her I was there been there done the NPD no how to push out buttons Im highly Empath to much so I’m concerned now because I felt lien I had found my issue but nothing you’ve said at the beginning of this video fits me?? Please help!!
Am really grateful and thankful for what dr Francis has done for me and my family. i have be suffering from HERPES for good five years with no solution, the diseases almost took my life and because I was unable to work and I was also loosing lots of money for medication, but one faithful day when I went online, I met lots of testimonies about this great man so I decided to give it a try and to God be the glory he did it. If you need his help or you also want to get cured just the way I got mine, just email dr Francis with : drfrancis0001@gmail.com or WhatsApp ;+2348110732593 and get your healing. He has cure for other deadly diseases like DIABETES TYPE 1 & 2, HIV, HEPATITIS B, C ALS, FIBROUS, CANCER,
thank you!
Thanks for sharing 💘