Hyp-Access

30/09/2025

Here's what we wish more care providers understood: when doctors find one potentially connective tissue related condition, they should be looking for ALL the ways your body might be affected. These conditions don't exist in isolation, they are interconnected.

But our current health care system treats symptoms separately instead of seeing the whole picture. One diagnosis here, another there, missing how everything connects.

This is why so many people spend years collecting puzzle pieces instead of getting comprehensive care that connects the issues.

Hyp+Care is a new clinic model designed by patients with complex chronic illness for patients with complex chronic illness.

Want to learn more? Visit hypaccess.org

Sign up for the Hyp+Care Waitlist!

Sign up for our newsletter! A free subscription with care tips, research, and updates!

Donate! Your contribution is making patient centered care a REALITY.

Links in bio.

ID:
Set of graphics with indigo background, bright pink accents, and white text. A bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue, followed by rounded letters reading “hyp+access” appears at the bottom on both slides.

Slide 1: Title text reads: “Widespread Connective Tissue Variance” Underneath a list of “shared symptoms: Chronic pain & fatigue, Joint instability, tension, Allergy and immune problems, Endocrine disruption, Slower healing / Sicker for longer, Autonomic dysfunction.” Adjoined to another list of “interconnected diagnosis: Connective Tissue Disorders, Mast Cell Activation Syndrome (MCAS), Dysautonomia, Long Covid, ME/CFS, Fibromyalgia & many more!”

Slide 2:
A checkmarked list reads: “Get involved! Sign up for the Hyp+Care waitlist! Sign up for our Newsletter! Donate today givebutter.com/MM4HypCare”

26/09/2025

Diagnosis is not a hard science. Many people exhibit the same exact symptom sets and are given a huge range of diagnoses. Why so much variation? Diagnostics are influenced by the particular specialist, patient bias, and many other factors outside of patient control!
Unfortunately, it’s these diagnostic categories that often prevent people getting access to life-saving care.

What if care was determined by what would IMPROVE patient quality of life, rather than rigid treatment options dependent on diagnostic siloes?

At Hyp+Care, that’s exactly our goal.

Want to learn more? Visit hypaccess.org
Sign up for the Hyp+Care Waitlist!

Sign up for our newsletter!

Donate! Your contribution is making patient centered care a REALITY.

Links in bio.

ID: Set of graphics featuring a plum background with lilac and bright green accents. Irregular hexagons holding text arrange together in the center. Each slide features a bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue, followed by rounded letters reading “hyp+access” is centered at the bottom.

Slide 1: Text reads: “Diagnosis is not an exact science!
The same exact symptoms can lead to different diagnoses depending on factors like physician specialty, physician bias, and luck. some examples:”

Slide 2: Text reads: “Chronic Pain - Might be diagnosed as …”
A list: “Hypermobility spectrum Disorders, Complex regional pain syndrome, Fibromyalgia, “All in your head,” Add your own in the comments!”

Slide 3: Text reads: “Energy Fluctuations - Might be diagnosed as …” A list: "Anxiety & Depression, Myalgic- encephalomyelitis / Chronic fatigue, Dysautonomia (ex. POTS), Mood disorder (ex. bipolar), Add your own in the comments!”

Slide 4: Text reads: “Gastrointestinal dysfunction-
Might be diagnosed as …” A list: “Anxiety, Mast cell activation syndrome, Leaky Gut, SIBO, Biome Disbiosis, Irritable bowel
Syndrome, Add your own in the comments!”

Slide 5: Text reads: “Get involved! hypaccess.org Sign up for the Hyp+Care waitlist! Sign up for our Newsletter! Donate today!”

26/09/2025

Diagnosis is not a hard science. Many people exhibit the same exact symptom sets and are given a huge range of diagnoses. Why so much variation? Diagnostics are influenced by the particular specialist, patient bias, and many other factors outside of patient control!
Unfortunately, it’s these diagnostic categories that often prevent people getting access to life-saving care.

What if care was determined by what would IMPROVE patient quality of life, rather than rigid treatment options dependent on diagnostic siloes?

At Hyp+Care, that’s exactly our goal.

Want to learn more? Visit hypaccess.org
Sign up for the Hyp+Care Waitlist!

Sign up for our newsletter!

Donate! Your contribution is making patient centered care a REALITY.

Links in bio.

ID: Set of graphics featuring a plum background with lilac and bright green accents. Irregular hexagons holding text arrange together in the center. Each slide features a bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue, followed by rounded letters reading “hyp+access” is centered at the bottom.

Slide 1: Text reads: “Diagnosis is not an exact science!
The same exact symptoms can lead to different diagnoses depending on factors like physician specialty, physician bias, and luck. some examples:”

Slide 2: Text reads: “Hypermobility spectrum
Disorders - Might be diagnosed as …”
A list: “Complex regional pain syndrome, Fibromyalgia, “All in your head,” Chronic Pain, Add your own in the comments!”

Slide 3: Text reads: “Anxiety & Depression Might be diagnosed as …” A list: “Myalgic- encephalomyelitis / Chronic fatigue, Dysautonomia (ex. POTS), Mood disorder (ex. bipolar), Energy Fluctuations, Add your own in the comments!”

Slide 4: Text reads: “Gastrointestinal dysfunction
Might be diagnosed as …” A list: “Anxiety, Mast cell activation syndrome, Leaky Gut, SIBO, Biome Disbiosis, Irritable bowel
Syndrome, Add your own in the comments!”

Slide 5: Text reads: “Get involved! hypaccess.org Sign up for the Hyp+Care waitlist! Sign up for our Newsletter! Donate today!”

Our mission is care access and justice for all people, with a focus on people with connective tissue related conditions and disabilities.

23/09/2025

Jokes aside, the current state of care for complex chronic conditions is an unforgiving journey that is primarily based on chance and privilege. Diagnosis is not an exact science. Diagnosis is often influenced by bias. Treatment should be accessible and consistent - not a gamble. Withholding care extends the period of time where symptoms go untreated, often causing symptoms to worsen.

At Hyp+Care, treatment is not a dangling carrot at the end of a string. It’s accessible, affordable, and personalized for everyone.

Want to learn more? Visit hypaccess.org where you can:

Sign up for the Hyp+Care Waitlist!

Sign up for our newsletter!

Donate! Your contribution is making patient centered care a REALITY.

Links in bio.

ID:
Slide 1: Meme featuring Chutes and Ladders, a colorful board game with a grid of 100 numbered spaces, depicting a path from 1 to 100. Yellow ladders connect lower spaces to higher ones and red chutes (or slides) connect higher spaces to lower ones. The Meme is titled, “The Current System of Complex Chronic Conditions: Where chance and privilege determine the outcome.” The starting space is labeled: “symptoms”. The final space is labeled: “treatment”. Chutes on the board are labeled: “misdiagnosis, gaslighting, and dismissal”. Several shorter ladders on the board are labeled: “random diagnosis”. The longest ladder on the board is labeled: “diagnosis that aligns with experience”. In the right bottom corner”” appears.

Slide 2: On a dark navy background, white text reads: “Get Involved!” Underneath, bright pink text reads “hypaccess.org.” A checklist with bright pink checkmarks reads: “Sign up for the Hyp+Care waitlist!”, “Sign up for our Newsletter!”, “Donate today!” A bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue, followed by rounded letters reading “hyp+access” is centered at the bottom. Three pink orbs stack on the right side.

28/08/2025

We can’t say it enough! Leaving this on the grid to remind and inform the community at large that Connective Tissues Connect the Issues - from long covid to dysautonomia to MCAS, fibromyalgia, ME/CFS, hypermobility spectrum disorders, and so many more

In our fight for medical care that centers quality of life, it is critical to understand that Connective Tissue is the foundation of care justice for Hyps everywhere. It’s what creates our whole body experiences. It’s what connects us! Literally!

PS: Connective Tissues are made up of more than just collagen and impacted by way more than just genetics. Stay tuned for our take on recent research and its implications for our communities.

To learn more about exactly what Connective Tissue is, visit the Hyp Blog!
hypaccess.org/resources/what-is-hyp/
Link in Bio.

Image Description:
On a solid plum background, a multi-sized network of irregular, light yellow hexagons tile together to create an abstract shape. Inside the hexagons, bolded navy and fuschia letters spell out: “connective tissues connect the issues”. The Hyp+Access lockup appears at the bottom: a bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue, followed by white text reading “hyp+access.”

21/08/2025

Welcome x back to our feed to share some of their Hyp symptoms! You may recognize many of these classic and common symptoms of connective tissue variance, but there are so many more. Our community is vast and our need for care is real and urgent.

For x’s full testimonial about receiving a “Benign Hypermobility” diagnosis in response to seeking care for these symptoms, visit the Hyp+Access YouTube page, or our LinkTree.

Follow x:
IG and Threads:
YouTube:
TikTok:

Video Description:
Community member, x, a light brown skinned Black and Asian agender person, wears a yellow collared shirt with multiple circle cut-outs and fringe details. Their hair is worn in two blue afro puffs. x has a black spiral shaped earring in one ear, a gold septum nose piercing, and dramatic blush on their cheeks, temples, and tip of their nose. They shares faer connective tissue symptoms that they initially brought to doctors.

17/07/2025

Re-sharing our essential Hyp Must Knows for Disability Pride Month.

“Hyp” is how we describe the many ways connective tissue differences show up - hyp-er and hyp-o body experiences linked to all kinds of factors including complex genetics, environmental toxicity, undernourishment, infections, physical trauma, and more. The “Hyp” constellation is wide. No two “Hyps” are alike.

We’re here to build a movement, shift the narrative, save lives, and imagine new models of care that actually work - for all of us.

We believe in a future where every Hyp has access to safe, dignified, and equitable care.



Image descriptions:

Slide one: A bright teal hexagon with rounded corners is centered on a solid navy background. Inside the teal hexagon, the outline of 4 hexagons concentrically nest in one another. Navy text reads, “Healthcare Must Knows for Hyps*”. Smaller text reads, “*folks w/ connective tissue variance”. In the bottom right corner, a bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue.

Slides 2 - 8: A set of graphics with identical formatting. A solid navy background with a bright teal line resembling fibrous tissue stretches in four directions, separating the square into 4 irregular sections. In the bottom right corner, a bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue, followed by rounded letters reading “hyp+access”.

Slide two: White text reads “A reminder” and continues: “The following information is provided to reduce future harm and validate past harm. If you’ve been hurt by medical care, it is not your fault.”

Slide three: Text reads: “Anesthesia”, and continues: “Hyps are often resistant to localized anesthesia, such as Lidocaine. Hyp alternatives: Articaine, Mepivacaine, Bupivacaine. Make sure the clinician knows how long it takes for medication to take effect and how long the effect lasts. (Schubart et al., 2019)”.

Slide four: Text reads, “Physical Therapy,” and continues: “For Hyps, traditional physical therapy often worsens symptoms & can cause injury during treatment with long term consequences. There is little to NO evidence for significant treatment of pain & fatigue. (Bovet et al., 2016; Castori, 2016; Scheper et al., 2017; Whalen & Crone, 2022).”

Slide five: Text reads, “Steroids,” and continues: “Chronic steroid use thins the skin & can degrade connective tissue layers beneath the skin. (Asboe-Hansen, 1976; Castori, 2012 and Jacks & Zirwas, 2016)”.

Slide six: Text reads, “Neuro & Psych Exams” and continues: “Clinicians may attribute widespread physiological dysfunction & neuro symptoms to psychiatric diagnoses. This exposes Hyps to harm. Harm includes: involuntary psychiatric admission”.

Slide seven: Text reads, “Fluoroquinolones,” and continues: “A common antibiotic class that has been shown to degrade connective tissue and is associated with aortic artery tears. (Center for Drug Evaluation and Research, 2018) Ciprofloxacin, often called “Cipro”, is a commonly prescribed Fluoroquinolone.”

Slide eight: Text reads, “Stretching,” and continues: “Can cause injury. This includes head or limb traction. (Schievink & Louy, 2007 and Starkey, 2013) Physical practices such as yoga, pilates, massage, etc. are all considered stretching.

Slide nine: The background is the same as the first slide. Rounded navy text reads, “for more resources visit: hypaccess.org”. In the bottom right corner there is a bright pink asymmetrical rounded H-shape resembling the goopy structure of connective tissue.

10/07/2025

Accessing care with a complex chronic condition is a labyrinth. An onslaught of specialists and appointments paired with a lack of care management services fosters overwhelm, which only makes things worse. The persistent advocacy often required to get access to care in the first place is a burden that shouldn’t be placed on patients.

That’s why we are opening a clinic created by and for disabled people with complex chronic illnesses. We know what it’s like to fight the system just to get the care we deserve. Hyp+Care is remodeling healthcare, centering patient experience, and providing patients with care management services, so patients aren’t left alone to coordinate their care.

Join the Hyp+Access newsletter to get updates about the Hyp+Care clinic! Link in bio.

Image Description:
On a dark navy background, an image of a brass chain lock on a door with a sliding panel resembling an elaborate maze. White text reads above: “How it feels to access care with a complex chronic condition.” Below text reads: “”

03/07/2025

We are devastated to learn of Patty’s passing.

Patty Berne, Co-founder and Executive and Artistic Director of Sins Invalid, was and will continue to be a leading force of knowledge and power in the Disability Justice movement. Patty lives on through the many movements, artworks, and teachings that she created - and through each of us and how we care for each other in real time.

Patty taught us at Hyp+Access so much about putting values into action, rejecting the shame the world too often places on us as disabled, q***r, and trans people, honoring ourselves and our needs, and doing everything we can to leave no one in our communities behind.

Sending our deepest love to everyone grieving, especially Patty’s close community.

Sharing Sins Invalid’s statement below.

We are heartbroken beyond words. Our beloved Co-Founder, Executive and Artistic Director, Patty Berne, joined the ancestors on May 29, 2025.

In the weeks and months ahead, we will hold spaces to honor and celebrate Patty’s world-shifting legacy. As they would wish: we will mourn, we will make art, we will learn, we will resist—and you will be invited to join us. You are in our hearts.

This is all so hard. For now, our statement is available in ASL, English and Spanish through Instagram posts and through links in our bio. If you would like to respond, please use these hashtags:



If you are moved to support Sins Invalid in this difficult time, we thank you for your love and generosity. The link to donate is in our bio. You can contact the Sins Team at pattypresente@sinsinvalid.org

Image descriptions in comments.

30/06/2025

Shifting perspectives from understanding diagnosis to be an isolated and unique experience to an overlapping and shared experience is a mind-blowing process. Once our community understands that our experiences connect us - not separate us - so much more life-altering care becomes within reach.

Soon, Hyp+Access will release a blog article diving into the staggering prevalence of connective tissue disorders and the demographics they affect most. You don’t want to miss this, prepare to have your mind blown!

ID: A meme featuring a chart with two columns. The left column describes the images appearing in the right column. The first row shows an x-ray of a skull with a small brain, the description reads: “rare diseases, separate diseases”. The second row shows a transparent profile of a head with a sparkling, slightly larger brain, the description reads “comorbid complex chronic illnesses”. The third row features an even more illuminated, larger brain, the description reads: “overlapping Dx (EDS, HSD, POTS, MCAS, fibro, ME/CFS, long covid, +++) affect millions, share symptom sets, and respond to the same treatments…” The final fourth row shows an even larger brain with beams of light extending in every direction, the description reads: “CONNECTIVE TISSUES CONNECT THE ISSUES!” “hyp_access” appears in the right bottom corner.

17/06/2025

“Benign” joint hypermobility should not be a diagnosis used in care settings. It’s that simple.
In this testimonial, x speaks to the medical gaslighting they experienced after being given a “benign” diagnosis. Even after bringing symptoms to multiple specialists and their primary doctor, they were still treated as if nothing was wrong.
The “benign” diagnosis, also referred to as “asymptomatic” hypermobility or “generalized” hypermobility is what many of us are told when our pain, fatigue, joint issues, or GI issues are deemed by care professionals as "not serious enough."
Your story matters. Your symptoms matter.

Follow x:
IG and Threads:
YouTube:
TikTok:

For more about x’s experience follow us on YouTube:

Video Description:
Community member, x, a light brown skinned Black and Asian agender person, wears a yellow collared shirt with multiple circle cut-outs and fringe details. Their hair is worn in two blue afro puffs. x has a black spiral shaped earring in one ear, a gold septum nose piercing, and dramatic blush on their cheeks, temples, and tip of their nose. They shares faer experiences with self advocacy while navigating multiple care providers.

12/06/2025

"Benign" joint hypermobility, now being rebranded as "asymptomatic" joint hypermobility, is a controversial topic within our communities. Hyp+Access takes a strong stance against the idea of anyone's connective tissue related experiences being labeled "benign" or "asymptomatic" because of how it impacts care.

Who decides what's benign and what isn't?
What happens to the real people labeled "benign"?

Community member, x, shares faer experiences with "benign" hypermobility...
Like so many of us, x experienced connective tissue issues hir whole life, but only gained access to community knowledge that helped connect the dots when disability escalated in adulthood - clueing themme into the fact that connective tissues connect the issues.

Follow x:
IG and Threads:
YouTube:
TikTok:

For more about x’s experience follow us on YouTube:

Video Description:
Community member, x, a light brown skinned Black and Asian agender person, wears a yellow collared shirt with multiple circle cut-outs and fringe details. Their hair is worn in two blue afro puffs. x has a black spiral shaped earring in one ear, a gold septum nose piercing, and dramatic blush on their cheeks, temples, and tip of their nose. They shares faer experiences with self advocacy while navigating multiple care providers.