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Discussion Topic  AR- Antagonists,PROTAC) for metastatic prostate can deal with kd (in Discussion of Papers) by micheldou
Hello,my friends,I am a kd patient from china.The questions I need to ask include the following five......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Several understandings in the diagnosis and treatment of Kennedy's disease (in Discussion of Papers) by micheldou
KD chinese technical group of the draft In November, 2023 1. Androgen blockade, how AR antagonists a......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Carrier of the disease (in Carrier Discussion) by Imokru2
My late brother contracted Kennedy’s but I did not. My mother of course was the carrier. I live in t......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Carrier Discussion

Discussion Topic  Hopeful News (in Medications and Therapies) by Reba
Hi, everyone, Just wondering if you have seen these clinical trials and what your thoughts are: ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Poll  Bariatric Surgery on KD pacients (in Open Topic) by Vanko
Are there any known studies about bariatric surgery on KD pacients? I'm a 44 years old male carrier,......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Advice for pre-symptomatic patient (in Open Topic) by Pablo Crespo
Hi everyone, My name is Pablo Crespo, and I'm 24 years old. I was diagnosed with Kennedy's disease ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Treffen der von SBMA - Betroffenen in Deutschland (in German Discussion) by bluefo
Das nächste bundesweite Treffen der an SBMA (Kennedy's Disease) Erkrankten, findet am 24.06.2023 in ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > German Discussion

Discussion Topic  Artificial intelligence (in Open Topic) by bartfarkel
Just for fun, I queried Chat GPT to write a CRISPR sequence that could treat Kennedy’s Disease. Here......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Increased BMs (in Open Topic) by raxel19
Hi there, Sorry for the potentially gross discussion, but has anyone experienced uptake in their BM......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Starting Journal Club (in Discussion of Papers) by Bob
Hi All, I am interested in starting a SBMA 'Journal Club' to read articles related to KD and discus......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  support group ? (in Open Topic) by Tim in TN
I'm wanting to know if anyone is interested in forming a support group. Virtual meeting perhaps (wee......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Anyone with KD in your 20's/30's? (in Open Topic) by Young
I'm a 26 yo male in the Bay Area who has been experiencing increasing symptoms in the past two year ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Neurologist in the SF Bay Area (in Open Topic) by DF
I have KD and am moving to the Bay Area in the new year. I am looking for a neurologist in the area ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Early Symptoms? (in Open Topic) by Rtrainor
Hello all, New here. Just reaching out to see if my symptoms align with KD. Here are my symptoms: ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Cold Climate Challenges (in Open Topic) by Kevin W
Was wondering how cold climate may be affecting KD symptoms. I'm considering relocating the the no......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Hi intensity Exercise (in Exercise Discussion) by Robert Greer
Is anyone on a hi intensity exercise program. My name is Robert I'm 64 I would classify my KD as adv......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Exercise Discussion

Discussion Topic  Swallowing exercise? (in Exercise Discussion) by KDA Adminstrator
I saw a TV show the other day where they were showing an exercise to help in being able to swallow f......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Exercise Discussion

Discussion Topic  Just diagnosed (in Open Topic) by Juan
Hello everyone. I am 53 and have just been diagnosed with Kennedy's disease. I am a little lost and ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Generalized Pain/Just don't feel good most of the time. (in Open Topic) by Pierre
I'm wondering, do most of you just feel bad most of the time? I have not felt "Good" in years. I w......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Mestinon or pyridostigmine (in Medications and Therapies) by Dan B
There has been discussion on the Facebook group about pyridostigmine (brand name Mestinon) and I thi......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  Esophageal Dilation (in Open Topic) by Pierre
Has anyone had problems or experience with esophageal dilation? I have had to have my esophagus dil......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Knee or hip replacements? (in Medications and Therapies) by JonH
Anyone out there with KD ever had a knee or hip replacement after having been diagnosed with KD? If ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  EOSINOPHILIC Esophagitis (in Open Topic) by Pierre
I happend to run across this condition looking for other information about my esophageal constrictio......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Facial paresis (in Open Topic) by bluefo
I have recently again increased problems with spasms in the face, facial paresis (Bells Palsy ???). ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Mask wearing Covid question (in Open Topic) by Kal
Hi I have a question about masks for Covid, I have had difficulty breathing when wearing a mask. I ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  facial muscle weakness (in Discussion of Papers) by jahradental
any of the people here are having signs and symptoms of facial muscle weakness and gone to any denti......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Statins (in Medications and Therapies) by Mike Murphy
I have taken Simvastatin from time to time to control my Cholesterol which 'flirts' with high-norma......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  My legs are getting very week. Any advice please? (in Open Topic) by DavidF1940
Hi everyone. I am just approaching my 81st birthday. I am relatively lucky as my KD came on fairly l......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Philips recall of certain BiLevel CPAP and BPAP machines (in Open Topic) by Ronald M.
Philips has issued an urgent recall of certain BiLevel CPAP and BPAP machines manufactured before Ap......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  News about drug Zolgensma used to treat SMA (in Medications and Therapies) by Dan B
The news media in the U.K. have reported that the first child there was treated with a new drug call......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  Surgery Concerns - Anesthetics (in Open Topic) by Ronald M.
Hello, one of the most frequent questions the KDA board receives is on Surgery Concerns - Anesthetic......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  A new leuprorelin study has published (in Discussion of Papers) by Istvan
A new leuprorelin study has published. Here is the abstract and reference. ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Are there any news about new clinical trials or treatments? (in Open Topic) by Jin
Hello. Nowadays, I know that all interest is focused on Covid 19. Still, I think someone is doing re......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Two things I should have done earlier (in Medications and Therapies) by Bob Heitzman
Colostomy and Intermittent self-catheterization (ISC.) I know, yuck! As my symptoms progressed it......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  Status of this study? (in Medications and Therapies) by JonH
Has anybody heard anything further regarding this study? It seemed so promising but then..nothing b......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  Neurologist Visits (in Medications and Therapies) by JonH
Hi, I was curious how often the general population of KD patients meet with their neurologists eac......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  Genistein promotes degradation of mutant androgen receptor (in Discussion of Papers) by Dan B
Here's an old paper, but one that has not been commented on in this forum, as far as I know. A 2013......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  Lap Swimming (in Exercise Discussion) by JonH
Hi, I started experiencing KD symptoms in 2014 but it took 5 years and thousands of dollars in copa......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Exercise Discussion

Discussion Topic  Assessment (in Open Topic) by LawrenceJR
Recently, I was admitted to the hospital for observation after experiencing tightness in my chest an......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Euthanasia (in Open Topic) by goodlead
What plans does anyone have for when the quality of life is so diminished that there's no point in g......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Merry Christmas and a Happy New Year! (in Open Topic) by Cam
To everyone on the forum....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Suspect I have KD, but some symptoms don't match... (in Open Topic) by John*
I've been experiencing a myriad of neuro symptoms, which as you might expect, has prompted hours of ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Concerned - Seeking Answers (in Open Topic) by Evan
I am currently a 22 year old male. It certainly doesn't help having massive health anxiety, but I ha......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  sarms (in Open Topic) by Mike Gill
I have been reading about sarms and how it might help people with kD . My question is, has anyone tr......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Wondering about this (in Open Topic) by Lilly
Dear All - Firstly, thank you for the website/open discussion forum. My 63 yo sister was recently di......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  COVID-19 (in Discussion of Papers) by Istvan
I already knew that COVID-19 may more threat us KD patients, because of severe respiratory impairmen......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  A Heartbreaking Day (in Open Topic) by Lilly
Dear All - Thank you again for providing this forum. It is a gift that has been invaluable to me. As......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Sign up for the 2020 Virtual KD Conference (in Open Topic) by Cam
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic


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