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What Questions Do You Have About PH1?
We’re creating an #AskMe video with one of our partners, Alnylam Pharmaceuticals, about life with primary hyperoxaluria type 1 (PH1), a rare disease that mainly affects the kidneys. We’re calling for community questions that may be answered by an expert physician in this upcoming video. That’s why we’re asking: what questions do you have about PH1?
Add yours in the comments below.
Your questions may be used in an upcoming sponsored video with Alnylam featuring a physician with deep expertise in PH1. This video will be published on The Mighty’s Facebook channels. Your questions will remain anonymous in the video. You can read The Mighty’s full privacy policy at themighty.com/privacy
Privacy Policy
You’ll find a community that has your back on The Mighty, no matter what health situation you’re going through. We talk about what health is really like — mental health, chronic illness, disability, rare disease, cancer, and much more.
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What questions do you have about PH1?
We’re creating an #AskMe video with one of our partners, Alnylam Pharmaceuticals, about life with primary hyperoxaluria type 1 (PH1), a rare disease that mainly affects the kidneys. We’re calling for community questions that may be answered by an expert physician in this upcoming video. That’s why we’re asking: what questions do you have about PH1?
Add yours in the comments below.
Your questions may be used in an upcoming sponsored video with Alnylam featuring a physician with deep expertise in PH1. This video will be published on The Mighty’s Facebook channels. Your questions will remain anonymous in the video. You can read The Mighty’s full privacy policy at themighty.com/privacy
Privacy Policy
You’ll find a community that has your back on The Mighty, no matter what health situation you’re going through. We talk about what health is really like — mental health, chronic illness, disability, rare disease, cancer, and much more.
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Neurofibromatosis #curenf #AskMe
So I am terrified at the moment, I have neurofibromatosis, it's impacted my life in many ways over my 45 years of life, I remember the stares and the pain of my ankle surgeries, the tumors I have had removed, finding out that I have a brain tumor, the learning and development issues. My struggle with numbers and math, from telling time, to remembering what I was taught about math.
But I have been having problems with smelling things that aren't really there, and not being able to smell what is.
I am having yet another MRI to see if my tumors in my brain are growing. I had cyberknife a few years back to try and shrink them and it helped, I just don't want to go through this again, NF combined with my other health issues I am just ready to be a timelord and regenerate, or a werewolf with healing powers 😆 seriously though, if you have NF too I am sorry for what you are going through.
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Bigotry And The Bystander Effect
🗣 - “Someone who has made up their mind will not change their mind. So, stop trying to worry about the fee-fees of someone who’s a terrible human being.”
‼️ - Get engaged!
➕ - Subscribe for more episodes & similar #Content - www.youtube.com/TaylorLakhryst
✉️ - #Comment with your thoughts or questions you'd like answered!
👍🏻 - Please #like & #Share this to help get heard!
❓ - What's #DwhellOnIt
👀 - Dwhell On It is a series where I answer your #questions about my lived #experience as a #trans woman!
📺 - A new episode gets uploaded every week! - youtube.com/playlist
🔖 - Bookmarks!
05:20 - Let's talk inclusion!
17:50 - Let's talk TERFs!
39:15 - Let's talk about being exclusionary!
51:08 - Let's talk about suppression!
53:03 - End anti-2SLGBTQIA+ abuse! - act.newmode.net/action/hirewheller/csr
🔗 - Links mentioned!
03:21 - #Letters4TransKids - "You Know Who You Are!" - www.youtube.com/watch
10:00 - Accomplishments, #Gratitude And More! - www.youtube.com/watch
30:30 - Workouts: Worth the effort. Bigots: Nope. - www.youtube.com/watch
40:55 - City Council Approves To Prefer #Kindness - www.youtube.com/watch
44:10 - Travelling, Being Left-Handed & More! - www.youtube.com/watch
💰 - Donate now! Help these fundraisers hit $1411!
❗️ - Support #RunForWomen & women's #MentalHealth programs! - run.convio.net/site/TR/Events/General
❗️ - Support #walk4md & individuals who live with neuromuscular disorders! - muscle.akaraisin.com/ui/walk4md22/p/TaylorLakhryst
👀 - Get involved! You can create #change
📣 - You can help! Everything inspiring HireWheller stays ongoing - biased systems, ignorant platforms, violent abusers, and isolated victims.
📣 - Grassroots #power comes from its #people Please #help by getting involved or referring people you know to create change against systemic bigotry & oppression. Thanks! 💜
💻 - Get connected!
#hirewheller A #grassroots group aiming to help the #2slgbtqia #Community overcome often-minimized struggles.
#Instagram instagram.com/hirewheller
#Twitter twitter.com/HireWheller
#Facebook www.facebook.com/HireWheller-103322085282334
👱🏼♀️ - Look me up!
#taylorlakhryst Trans woman, advocate, INFJ, ♊️, she/her/hers 🏳️⚧️
#linktree linktr.ee/TaylorLakhryst
📒 - Alt information
* Text: Dwhell on it with Taylor Lakhryst - Bigotry And The Bystander Effect - Episode Forty-Seven - HIREWHELLER
* Description: A blonde woman wearing a purple sweater is smiling and sitting in front of a beige wall. There is black, grey, and white text on a turquoise background.
* Captions: Automated
#Activism #AskMe #Business #Canada #Career #causes #changemakers #Charity #cityofwinnipeg #Comments #contentcreator #creator #Diversity #diversityandinclusion #dogood #donate #Employment #Energy #Equity #ethics #eventplanning #Events #Fundraising #gender #government #grateful #humanities #humanrights #Inclusion #inequality #leaders #LGBT #LGBTQ #linkinbio #Love #manitoba #Manitobans #mbpoli #MentalHealth #Motivation #Network #opportunities #Opportunity #Organizing #partnerships #philanthropy #policies #policy #Pride #ProtectTransKids #ProtectTransYouth #quality #question #Respect #Safety #socialgood #SocialMedia #Sports #Success #training #Transgender #Transphobia #transphobic #Travel #Video #winnipeg #Work #wpgpoli #Youtube
LOVE YOU by Shoppers Drug Mart Run for Women - Winnipeg 2022: Taylor Lakhryst - Run for Women - Course pour les Femmes
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#AskMe : Are there certain exercises that can help someone better manage their MS?
You asked, an expert answered! 💡
🧠 Here’s what neurologist Dr. Elena Grebenciucova had to say:
“Exercise is very important for all people living with multiple sclerosis. However, creating an exercise plan is best done initially with a physical therapist to ensure that the type of exercise you are doing is ultimately safe for you, in case you have some level of trouble with balance or weakness. Exercising 3-4 times a week for 30-45 weeks is ideal, but many patients new to the exercise regimen or still recovering from their recent attack need to ease into exercising very slowly and gradually increasing their time. For example, if you are very fatigued, you may find it very difficult to exercise, but if you try and set a goal of just 10-15 minutes 3-4 times a week, and then gradually over time increase it to 20-30 min and finally 30-45 min, the process may be easier.
For those people who experience spasticity/muscle spasms, stretching before exercise is critical. Also, you have to make sure that you are not overheating during the exercise. In order to avoid overheating, make sure you hydrate plenty prior to exercise and during exercise, wear appropriate clothing, and take frequent breaks, as well exercise in a well-ventilated, cool area. If you still feel that exercising causes you more muscle spasms or heaviness in the legs or more tingling, try to reduce the intensity of the exercise and take more frequent breaks.
Aerobic/cardio exercise is important for all patients with multiple sclerosis. Exercise helps to reduce fatigue levels, improve mood and sleep, and maintain muscle mass in those people who may have some level of weakness.”
#MultipleSclerosis #Disability #ChronicIllness #ChronicPain #MentalHealth
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City Council Approves To Prefer #Kindness
🗣 - "Good for you, everybody, all you elected officials. Trying so hard to make an eight or nine, or whatever dumb page amount, document to say, "Hey, be nice to someone else." But we're not going to define what "nice" is, so then we don't get in trouble for it."
‼️ - Get engaged!
➕ - Subscribe for more episodes & similar #Content - www.youtube.com/TaylorLakhryst
✉️ - #Comment with your thoughts or questions you'd like answered!
👍🏻 - Please #like & #Share this to help get heard!
❓ - What's #DwhellOnIt
👀 - Dwhell On It is a series where I answer your #questions about my lived #experience as a #trans woman!
📺 - A new episode gets uploaded every week! - youtube.com/playlist
🔖 - Bookmarks!
03:37 - Fascinating video! I like that you said you had to accept yourself. You didn't say anything about workouts worth the effort yet. Can you do a video when you talk about your workouts to help a girl out? Thanks.
10:57 - I've been on HRT for almost a week, and my chest is growing, but there's some shrinking I'm not comfortable with. In your experience, does the D shrink or the B's? I got told that it would be the testes, but it's not the case for me, so how is it for you?
18:36 - Are there other cities that you know of that have policies better than what got presented?
21:27 - Does the "Corporate Advertising Policy" count as a tangible measure?
23:28 - End anti-2SLGBTQIA+ abuse! - act.newmode.net/action/hirewheller/csr
🔗 - Links mentioned!
02:20 - #Letters4TransKids - "You Know Who You Are!" - www.youtube.com/watch
03:30 - Workouts: Worth the effort. Bigots: Nope. - www.youtube.com/watch
03:50 - Doesn’t working out make transitioning worse? - www.youtube.com/watch
22:55 - **Placeholder for Council segment** - clkapps.winnipeg.ca/DMIS/permalink.asp
💰 - Donate now! Help these fundraisers hit $1411!
❗️ - Support #RunForWomen & women's #MentalHealth programs! - run.convio.net/site/TR/Events/General
❗️ - Support #walk4md & individuals who live with neuromuscular disorders! - muscle.akaraisin.com/ui/walk4md22/p/TaylorLakhryst
👀 - Get involved! You can create #change
📣 - You can help! Everything inspiring HireWheller stays ongoing - biased systems, ignorant platforms, violent abusers, and isolated victims.
📣 - Grassroots #power comes from its #people Please #help by getting involved or referring people you know to create change against systemic bigotry & oppression. Thanks! 💜
💻 - Get connected!
#hirewheller A #grassroots group aiming to help the #2slgbtqia #Community overcome often-minimized struggles.
#Instagram instagram.com/hirewheller
#Twitter twitter.com/HireWheller
#Facebook www.facebook.com/HireWheller-103322085282334
👱🏼♀️ - Look me up!
#taylorlakhryst Trans woman, advocate, INFJ, ♊️, she/her/hers 🏳️⚧️
#linktree linktr.ee/TaylorLakhryst
📒 - Alt information
* Text: Dwhell on it with Taylor Lakhryst - City Council Approves To Prefer Kindness! - Episode Forty-Six - HIREWHELLER
* Description: A blonde woman wearing a white and blue shirt is smiling and sitting in front of a wall. There is white and light pink text on a red background.
* Captions: Automated
#Activism #Canada #Diversity #ethics #Equity #government #humanities #Inclusion #LGBT #LGBTQ #manitoba #Motivation #Organizing #policy #question #Transgender #winnipeg #Love #2slgbtqia #AskMe #causes #change #changemakers #Charity #Comment #Comments #Community #Content #contentcreator #creator #dogood #donate #Employment #eventplanning #Events #Fundraising #gender #grassroots #grateful #help #like #linkinbio #MentalHealth #Kindness #leaders #people #philanthropy #power #Respect #Safety #Share #socialgood #SocialMedia #Sports #training #Travel #trans #Video #SplashPageSelfie #DwhellOnIt #hirewheller #taylorlakhryst #Instagram #Twitter #Facebook #linktree #Youtube #RunForWomen #walk4md #ProtectTransYouth #Letters4TransKids
abuse
You’ll find a community that has your back on The Mighty, no matter what health situation you’re going through. We talk about what health is really like — mental health, chronic illness, disability, rare disease, cancer, and much more.
Post
Travelling, Being Left-Handed & More!
🗣 - "I don’t want to get political. I don’t wake up and say, “I’m gonna get political today.” Like, that’s not my goal. But I know that if I want to have a life, I have to fight for my life. Who says that? Ask yourself! How many of you watch this right now and know that you have to fight for your life when you wake up? Your right to live, your right to employment, your right to safety, your right to dignity. How many people wake up and tell themselves those are things they need to do today. And I don’t even do that for myself. I do that for other people. I do that for the kids."
‼️ - Get engaged!
➕ - Subscribe for more episodes & similar #Content - www.youtube.com/TaylorLakhryst
✉️ - #Comment with your thoughts or questions you'd like answered!
👍🏻 - Please #like & #Share this to help get heard!
❓ - What's #DwhellOnIt
👀 - Dwhell On It is a series where I answer your #questions about my lived #experience as a #trans woman!
📺 - A new episode gets uploaded every week! - youtube.com/playlist
🔖 - Bookmarks!
03:57 - What do you think most people don't realize about trans folks?
06:22 - Is there a country you will never go to that may surprise others?
07:46 - Is there any advice that you wish you had? Do you have any to share?
10:55 - I don't know how to ask this, I think. Why do you want to be a woman or transgender?
12:00 - End anti-2SLGBTQIA+ abuse! - act.newmode.net/action/hirewheller/csr
🔗 - Links mentioned!
03:45 - #Letters4TransKids - "You Know Who You Are!" - www.youtube.com/watch
04:45 - Transgender Awareness Week - "Progress takes time, but it should not end with us going back in time" - www.youtube.com/watch
06:00 - My Call to Action for Trans Day of Visibility! - www.youtube.com/watch
07:00 - Hallway Conference - Taylor Lakhryst - Creating Truly Inclusive Events - www.youtube.com/watch
08:30 - The Power of Now … and NEWS! - #DwhellOnIt Ep. 34 - www.youtube.com/watch
💰 - Donate now! Help these fundraisers hit $1411!
❗️ - Support #RunForWomen & women's #MentalHealth programs! - run.convio.net/site/TR/Events/General
❗️ - Support #walk4md & individuals who live with neuromuscular disorders! - muscle.akaraisin.com/ui/walk4md22/p/TaylorLakhryst
👀 - Get involved! You can create #change
📣 - You can help! Everything inspiring HireWheller stays ongoing - biased systems, ignorant platforms, violent abusers, and isolated victims.
📣 - Grassroots #power comes from its #people Please #help by getting involved or referring people you know to create change against systemic bigotry & oppression. Thanks! 💜
💻 - Get connected!
#hirewheller A #grassroots group aiming to help the #2slgbtqia #Community overcome often-minimized struggles.
#Instagram instagram.com/hirewheller
#Twitter twitter.com/HireWheller
#Facebook www.facebook.com/HireWheller-103322085282334
👱🏼♀️ - Look me up!
#taylorlakhryst Trans woman, advocate, INFJ, ♊️, she/her/hers 🏳️⚧️
#linktree linktr.ee/TaylorLakhryst
📒 - Alt information
* Text: Dwhell on it with Taylor Lakhryst - TRAVELLING, BEING LEFT-HANDED & MORE! - Episode Forty-Five - HIREWELLER
* Description: A blonde woman wearing an orange shirt is sitting in front of a wall. There is orange and light pink text on a magenta background.
* Captions: Automated
#Activism #Canada #Diversity #ethics #Equity #government #humanities #Inclusion #LGBT #LGBTQ #manitoba #Motivation #Organizing #policy #question #Transgender #winnipeg #Love #2slgbtqia #AskMe #change #Comment #Comments #Community #Content #Employment #eventplanning #Events #Fundraising #gender #grassroots #grateful #help #like #MentalHealth #leaders #people #power #Respect #Safety #Share #SocialMedia #Sports #training #Travel #Video #SplashPageSelfie #DwhellOnIt #hirewheller #taylorlakhryst #Instagram #Twitter #Facebook #linktree #Youtube #RunForWomen #walk4md #ProtectTransYouth #Letters4TransKids
Your Q's, my A's! Let's #DwhellOnIt!
Dwhell On It is a series where I answer your questions about my lived experience as a trans woman! Every journey is unique, and I am happy to share mine! Ask...
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Sex, Transitioning And Bigotry, Oh My!
"Trans erasure is happening. You are responsible for using your position and platform to shut this down - yesterday. Trans erasure is a real thing. It is happening in front of us."
❓ - What’s #DwhellOnIt ?
👀 — Dwhell On It is a series where I answer your #questions about my lived #experience as a #trans woman!
📺 — A new episode gets uploaded every week!
❗️ — Watch! Comment! Share!
➕ — Subscribe for more episodes & similar #Content !
✉️ — #Comment with your thoughts or questions you’d like answered!
👍🏻 — Please #like & #Share this to help get heard!
03:43 - How important is sex to you?
05:04 - What changed about you the most since you transitioned?
10:11 - Are you embarrassed to be transgender?
10:18 - Is there anything often said of trans people you can't listen to?
13:34 - End anti-2SLGBTQIA+ abuse! - act.newmode.net/action/hirewheller/csr
❗️ — Donate now! Help these fundraisers reach $1411!
Support #RunForWomen & women’s #MentalHealth programs! - run.convio.net/site/TR/Events/General
Support #walk4md & individuals who live with neuromuscular disorders! - muscle.akaraisin.com/ui/walk4md22/p/TaylorLakhryst
#taylorlakhryst : Trans woman, advocate, INFJ, ♊️, she/her/hers 🏳️⚧️
YouTube - www.youtube.com/TaylorLakhryst
Twitter - twitter.com/TaylorLakhryst
Linktree - linktr.ee/TaylorLakhryst
#hirewheller : A #grassroots group aiming to help the #2slgbtqia+ #community overcome often-minimized struggles.
#Instagram - instagram.com/hirewheller
Twitter - twitter.com/HireWheller
#Facebook - www.facebook.com/HireWheller-103322085282334
❗️ — Get involved! You can create #change ! You can help! Everything inspiring HireWheller stays ongoing — biased systems, ignorant platforms, violent abusers, and isolated victims. Grassroots #power comes from its #people ! Please #help by getting involved or referring people you know to create change against systemic bigotry & oppression. Thanks! 💜
#Activism #Canada #Diversity #ethics #Equity #government #humanities #Inclusion #LGBTQIA #LGBT #LGBTQ #manitoba #Motivation #Organizing #policy #question #AskMe #Transgender #winnipeg #Love
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