“You feel like your whole body is attacking you. And you feel this for days. And it’s so hard to have a good relationship with your body after that battle.”
In the latest episode of The Mighty Podcast, we explore how even the “normalized” pain (or other symptom flare-ups) creates complicated feelings about the bodies we live in.
Listen to the full conversation: https://spoti.fi/3rbRFQB
"You have to constantly cut corners for yourself. And those corners end up being your mental health, your physical health, whatever you do to get by."
The tangible and emotional costs of health and disability are so real. Listen to the latest episode of Table Talk With The Mighty where they talk about hidden expenses and sifting through the following conundrum: What do you do when you need a job to pay for insurance and medical bills, but aren’t well enough to work?
http://bit.ly/tabletalk_09-27-23
“It’s just an incredibly isolating experience to have any kind of chronic illness.”
If you don’t know anyone in your life who is going through a similar experience to you, it can really weigh on your mental health. Nowadays, it’s incredible that we have online platforms that open up that ability to connect with others who “get it” and can share their own experiences back.
Because you aren’t alone in what you’re going through.
https://spoti.fi/3sXDMWE
#podcasts #themightypodcast #chronicillness #loneliness #isolation #skin
“I will obsess over every piece of my body, especially with my skin, but it's so true: nobody notices as much as you. Nobody cares as much.”
Skin conditions are extremely common – from rosacea to eczema, acne to keratosis pilaris –and yet there is stigma that leads us into feeling shame that we turn into negative self-talk. If you’ve become one of your biggest critics, know that we’ve been there too. https://spoti.fi/45Pq4Ub
As a college student, you have the right to request accommodations to ensure your educational experience is accessible and equitable on your journey to academic excellence. Here are five common accommodations you can request:
1. Extended Test-Taking Time
2. Note-Taking Assistance
3. Accessible Materials
4. Alternative Formats for Exams and Assignments
5. Housing Accommodations
STILL, self-advocacy can be draining. I recommend asking for help, knowing your rights (a huge source of empowerment), and leaning on the support of your school’s disability services office. They help you with everything from gathering documentation through outreach to faculty.
Guilt and shame can come up whenever we’re asking for something we feel is “extra”, but there’s nothing extra or bad about you getting what you need to have the college experience and success you’ve been working hard for. I’m rooting for you!
P.S. Please sound off in the comment section with accommodations that have worked for you!
I don’t know about you, but we sure find wellness culture to be frustrating.
“My take on it has definitely been tainted by self-care and wellness culture – it’s preying on people with vulnerabilities.”
Listen in to our deep dives on all things “wellness”: http://bit.ly/tabletalk_08-23-23
Caring for a Child with SMA
For Full Prescribing Information, please click here: http://bit.ly/spinrazaPI
For Important Safety Information, please click here: http://bit.ly/SpinrazaISI
As a toddler, Alyssa’s daughter Lucy was diagnosed with spinal muscular atrophy (SMA), a rare genetic neuromuscular disease that causes progressive muscle weakness and loss of motor function over time.
Since she received her diagnosis, Lucy has worked with specialists for several years to access the care and resources she needs to help preserve her motor function for as long as possible.
Learn more about Alyssa and Lucy’s story: https://bit.ly/3TEW746
For US Audiences Only. #Sponsored by Biogen.
From DIY to “thanks, but no thanks,” Skye, Carla, and Kat dive into their personal experiences with physical and vestibular therapy. Get the validation and encouragement you need to graduate, stick with the plan, or take matters into your own hands.
This episode is made possible by Rare Weekly.
Check it out here: https://bit.ly/tabletalk_01-31-23
Subscribe to Rare Weekly: https://bit.ly/rareinbox
Journey Through Life With a Rare Disease: Two Unique Perspectives
See full Prescribing Info: http://bitly.ws/uNW5
Spinal muscular atrophy (SMA) is a rare, genetic neuromuscular disease that affects people of all ages. Join patient advocates Alexa Dectis and Jud Broadhurst as they discuss how treatment advances have impacted their lives with expert neurologist Dr. Chamindra Konersman and Mighty host Ashley
For US Audiences Only. Sponsored by Biogen.
Wow 😯🤩 Mighty friends, our team has made some sweeping changes to our website and we think you’ll love it even more now! Here’s a sneak peek: Can we get some 👏 for our designers and engineers?
Easing the Transition for a Child With a Rare Disease
Join @TSCAlliance’s Director of Community Education and Resources Shelly Meitzler, along with parent and family advocates, as they discuss the difficulties surrounding life transitions with tuberous sclerosis complex (TSC) and TSC-associated neuropsychiatric disorders (TAND).
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#RareDisease
Meet Dr. Oudiz
With years of experience treating patients with pulmonary arterial hypertension (PAH), Dr. Oudiz knows how important it is to establish a trusting partnership with each individual. Watch the video below to hear how he communicates with each patient to help identify PAH treatment options that are right for them.
Dr. Oudiz has partnered with Janssen.
Please see Important Safety Information throughout and at the end of this video, and full Prescribing Information at https://bit.ly/3uQ4Cer and Patient Product Information at https://bit.ly/2Rj8aIs.
Meet Emily and Brad
Managing a pulmonary arterial hypertension (PAH) diagnosis can be challenging while raising a family. Watch the video below to hear how Emily works with her family and her healthcare team to discuss PAH treatment options that are right for her.
Sponsored by Janssen Pharmaceuticals, Inc.
Please see Important Safety Information throughout and at the end of this video, and full Prescribing Information at https://bit.ly/3uQ4Cer and Patient Product Information at https://bit.ly/2Rj8aIs.
How I Help My Patients Navigate Their PAH Journey
Every pulmonary arterial hypertension (PAH) patient is different. That’s why Dr. Raval emphasizes working closely with your care team to better monitor, manage and set goals for yourself. Watch how Dr. Raval communicates with his patients to find a PAH treatment option that is right for them.
Dr. Raval is a paid speaker for Janssen. The information does not replace or substitute medical advice from your healthcare providers. Please consult with your healthcare team for treatment and medical advice.
Please see Important Safety Information throughout and at the end of this video, and full Prescribing Information at https://bit.ly/3uQ4Cer and Patient Product Information at https://bit.ly/2Rj8aIs.
Improving Research and Therapies for Rare Disease
Join The Mighty as we talk with Dr. Dominique Lessard and Kathryn Atchley from @KIF1A about how they are motivating their community to help improve research and therapies for rare diseases.
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Finding a Rare Disease Clinical Network
Join the Mighty as we talk with Vanessa, Board Member of @Dup15qAlliance and Amanda, CEO of the @AngelmanSyndromeFoundation about the importance of finding rare disease clinical networks and what to look for when adding a health care provider to your network.
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