Next Generation of Cystinosis

04/16/2026

🎥

As Cystinosis adults and chronic illness adults, we tend to have more doctor’s appointments than the average bear.

Medical appointments don’t just take a physical toll—they can take an emotional and mental one, too. The amount of time we have to take out of our days to go to these appointments can feel like having an extra job with extra pressure. It can be really overwhelming.

This week’s video focuses on emotional self-regulation and planning ahead—and how small shifts can make medical experiences feel more manageable.

Emily Parks shares important reminders like:
It’s really human for stress to build ahead of time, and you don’t have to carry all of it before the appointment even begins.

It’s easy to spend hours (or days) anticipating how difficult something will be. But that “preemptive suffering” can make the experience feel longer and heavier than it actually is.

Instead, try narrowing your focus:
Plan your timing so you’re not rushing.
Think about the next hour or two—not the entire day. Stay in the moment.
Give yourself space to pause and reevaluate along the way.

Emily Parks also shares a helpful metaphor:
Approach your day like you’re driving a big rig—keep your eyes a little further down the road, not just right in front of you.

If your appointment is at 9:30, remind yourself:
10:00 is coming. It will pass.

And just as important—
You don’t have to be totally okay to get through it.

You just need a space where it’s safe to not be okay.
That alone can make it easier to move forward.

And when it’s over, plan something to look forward to:
A coffee and bagel with your favorite cream cheese.
Listening to some of your favorite music.

Find what works for you.

A small reward that reminds you—you made it through.

▶️ Watch this week’s video to learn more about navigating medical stress with intention and care.
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💜 Support the work of Next Generation of Cystinosis
👉 https://donorbox.org/embed/next-generation-of-cystinosis

🎥 Missed previous videos?
👉 https://nextgencystinosis.org/resources/

04/16/2026

[From Misa On Wheels

CW: SA

Image description: white text on teal background that reads:

“April is S*xual Assault Awareness Month.

Here are some conversations that many are not ready to have though:

Disabled people are twice as likely as their non-disabled peers to experience sexual assault in their lifetime.

Losing benefits upon marrying and meager disability payment amounts often trap disabled people in unsafe relationships or circumstances.

Furthermore, services that support victims of sexual assault are not often accessible to disabled survivors.”]

04/14/2026

Quick question to everyone:

What’s the strangest way you’ve ever tried to describe your pain?

(And did your doctor understand it? 😅)

When we’re in pain, it can be really hard to translate what it actually feels like to our medical team.

Sometimes they speak “patientnese”… but other times, years of training have ingrained a whole system of “medicalnese” that’s not always easy to break through.

This article may help bridge the gap—translating our very real experiences into language providers understand, so we can get more targeted, effective care.

The author is a former nurse who lived with chronic illness and she combines medical knowledge with personal experience to help patients better communicate with healthcare providers.

Link here: https://open.substack.com/pub/chronicillnesslifehacks/p/explain-your-pain?utm_campaign=post-expanded-share&utm_medium=post%20viewer

As people living with chronic pain, we are experts at feeling pain, but how well do we describe it to our doctors?

04/13/2026

Chronic illness productivity reality:
Sometimes you're on a roll.
Sometimes you're… thinking very hard about doing the thing—and that’s as far as it goes today.

Energy, symptoms, and brain fog don’t follow a schedule.
Productivity isn’t always visible—
but that doesn’t mean it isn’t real.

04/09/2026

04/09/2026

🧠
Checking your emotions in clinical settings can be just as important as advocating for your needs.

In this video from our continuing video series by Emily Parks, she shares an important perspective on navigating tough conversations with providers—especially when emotions are running high.

✨ It’s okay to cry—those reactions are human
✨ Anger, while valid, often doesn’t help conversations move forward
✨ Pausing and taking a breath can help you stay grounded
✨ A more calm, even slightly detached tone can help you be heard more clearly
✨ Emotional boundaries can protect your energy in uncomfortable settings

She highlights something many of us experience but don’t always talk about—how hard it is to stay regulated when you’re not being heard.

But you can still advocate for yourself.
You can still say, “This isn’t working.”

And you can do it in a way that supports both your voice *and* your well-being.

Your health matters.
Your comfort matters.
Your voice matters.

💜 Support the work of Next Generation of Cystinosis
👉 https://donorbox.org/embed/next-generation-of-cystinosis

🎥 Missed previous videos?
👉 https://nextgencystinosis.org/resources/

04/08/2026

April is !

Celebrate with poets and authors Author Amanda Leigh and Jessica VanderWerff.

Any work during this event can be submitted to Next Generation of Cystinosis first zine, Fractal Whispers.

Comment below for a virtual session exploring nature-themed poetry and the arrival of Spring.



















[ID: the graphic announces Free Writing Workshop For adults with cystinosis 18+. This takes place on Tuesday, April 21st at
2 pm EST/1 pm CST/ 12 pm MST/ 11 am PST.

The background is white.
In the middle, an image of daisy flowers peek behind a spring green stripe. A notebook filled with entries and a pen are below the stripe.

The description in the green stripe reads:

Join us to celebrate April's National Poetry Month and the arrival of Spring with some nature themed poetry exercises! A great chance to get creative!

This is hosted by Amanda Leigh and Jessica VanderWerff.

Event provided by Next Generation of Cystinosis ]

04/04/2026

Tips for Managing Holiday Stress
by Center for Chronic Illness Support Group Central

1. Practice Deep Breathing-

It sounds too simple that we forget to breathe correctly. So whether it's taking deep breaths or practicing breathing meditation, you want to make sure to breathe out stress during the holidays.

2. Prioritize -

You've been invited to several holidays activities. Before you say yes to all of them, consider the ones you want to go to and the invites you will pass on. It is okay to say no.

3. Meditate -

As a way to ground yourself and continue to practice self-care during the holiday season, meditating is a great way to combat stress. A few minutes a day has been shown to help relieve tension and stress!

4. Seek Peer Support-

Connect with others who are going through similar issues. Connecting with others has been shown to improve feelings of depression, anxiety, and reduce stress.

Thank you to Support Group Central on HeyPeers for these reminders!



[ID: a bouquet of sunflowers, red roses, thistles, purple and yellow wildflowers sit in a brown vase that has two Valentine-style hearts outlined in gold on it is pictured below.]

04/02/2026

It's where it's to signify neurodiversity isn't a condition to be cured, rather accommodated.

Neurodiversity has a higher co-occurence with cystinosis.

Next Generation of Cystinosis recommends the following support pages:

The Autistic Self Advocacy Network

Autistic Women & Nonbinary Network

Autism in Black Inc.

[ID: unsure of the original creator of this graphic but it isn't us.

An umbrella with many colors and designs is the center image. The word "Neurodiversity" is over the umbrella.

The following examples of neurodiverse conditions are written underneath the umbrella:

• dyslexia
• autism spectrum disorder
• developmental language disorde
• tic disorders
• intellectual disability
• attention deficit hyperactivity disorder
• developmental coordination disorder
• dyscalculia ]

04/02/2026

🧠

Changing providers is a valid—and sometimes necessary—step toward compassionate, respectful care.

Advocating for yourself can help you build a healthcare team that supports both your physical health and your emotional well-being.

In this video, Emily Parks shares how to:

✨ Reframe your care as something you have a voice in
✨ Choose providers based on fit, not just convenience
✨ Seek care across different hospital systems when needed
✨ Use telehealth and research to expand your options
✨ Take more control over your healthcare decisions

She also explains why she thinks of it as “diversifying” her healthcare—like spreading investments across more than one place. That way, if one doctor or system isn’t meeting your needs, you’re not stuck without options.

Sometimes the best care comes from staying where you are.
Sometimes it comes from finding someone new.
Sometimes it comes from remembering that you deserve to be heard.

Your health matters.
Your comfort matters.
Your voice matters.

💜 Support the work of Next Generation of Cystinosis
👉 https://donorbox.org/embed/next-generation-of-cystinosis

🎥 Missed previous videos?
👉 https://nextgencystinosis.org/resources/

04/01/2026

Comment below for a virtual session exploring poetry.

If you've been considering submitting writing for NGC's new zine this can be your time to create your piece(s).



















[ID: the graphic announces Free Writing Workshop For adults with cystinosis 18+. This takes place on Tuesday, April 21st at
2 pm EST/1 pm CST/ 12 pm MST/ 11 am PST.

The background is white.
In the middle, an image of daisy flowers peek behind a spring green stripe. A notebook filled with entries and a pen are below the stripe.

The description in the green stripe reads:

Join us to celebrate April's National Poetry Month and the arrival of Spring with some nature themed poetry exercises! A great chance to get creative!

This is hosted by Amanda Leigh and Jessica VanderWerff.

Event provided by Next Generation of Cystinosis ]

03/31/2026

We support the joy found in living trans and rare. We include all adult people with cystinosis and rare disease.

can cause and and some seek .

This is called and doesn't necessarily mean the human is trans or nonbinary. People who are cis and straight take hormone therapy as well.

There are 3 to 5 million people that identify BOTH LGBTQ2S and disabled.

As far as chromosomes go there is intersection with the rare disease community and transgender/intersex/non binary humans:

*Swyer syndrome
*Turner syndrome
*Ovotesticular Disorder of S*x Development
*Klinefelter syndrome
*De la Chapelle syndrome
*XY gonadal dysgenesis
*XYY syndrome
*XX male syndrome
*### syndrome





[ID: the graphic below is on a pink background scattered with roses shaded pink and blue. An image of three humans, one using a wheelchair and one standing slightly behind them, are holding up the trans flag (pink and blue and white stripes) while the third human poses in front.

The title declares today March 31 "International Trans Day of Visibility".

Mika Covington, cofounder of Next Generation of Cystinosis is quoted " Not only am I a rare disease patient, but I am a trans woman. I cannot separate my being trans from also living with a rare disease."

The NGC logo is in the bottom left corner. Our website is: nextgencystinosis.org]