#hidradenitissuppurativa — Public Fediverse posts

RE: https://mastodon.social/@ellespeaks/116363324311316993

75$ to go for mini goal 2. Due april 14th

Anything helps! No other help besides mutual aid. Disabled, diabetic and queer woman w no family.

Im also sick as hell. Have found a painless abscess in my mouth.
also have #hidradenitissuppurativa spot on my scalp?! havent had one there before. Feeling worn/self conscious

#disabled #disabledartist #mutualaid #MutualAidRequest #MutualAidBoost #MutualAidSavesLives #poverty @[email protected] @[email protected] @disabledvoices @[email protected] @[email protected] @povertyandinequality

https://www.europesays.com/ch/36921/ Novartis presents new data on early symptom relief and long-term control in complex skin diseases at AAD 2026 #AAD #ChronicDiseases #ChronicSpontaneousUrticaria #Cosentyx #DataIntegrity #DataPrivacy #EfficacyData #HidradenitisSuppurativa #Novartis #OralPresentation

https://www.europesays.com/ch/32580/ Novartis Cosentyx® receives FDA approval for pediatric patients aged 12+ with moderate to severe hidradenitis suppurativa #Cosentyx #FDA #HidradenitisSuppurativa #Novartis #pediatric patients #PsoriaticArthritis #TreatmentOption #TreatmentOptions

https://www.europesays.com/ch/31642/ Novartis Cosentyx® receives FDA approval for pediatric patients aged 12+ with moderate to severe hidradenitis suppurativa #Cosentyx #FDA #HidradenitisSuppurativa #Novartis #pediatric patients #PsoriaticArthritis #TreatmentOption #TreatmentOptions

https://www.europesays.com/uk/180588/ HS Genetics Point Toward the Hair Growth Cycle #AestheticMedicine;FacialRejuvenation #DrugDevelopment #DrugDevelopmentPipeline #DrugDiscovery #DrugPipeline #Genetics #Genomics;GenomicMedicine #Hair #HairGrowth #HidradenitisSuppurativa #Laser #LaserHairRemoval #LaserAssistedHairRemoval #Science #SkinAndSoftTissueInfection;SkinAndSoftTissueInfection(SSTI);SSTI #UK #UnitedKingdom #wound #WoundHealing #WoundManagement;WoundCare #WoundRepair

Mediterranean diet shows promise in easing psoriasis, acne, and hidradenitis suppurativa https://www.diningandcooking.com/1967075/mediterranean-diet-shows-promise-in-easing-psoriasis-acne-and-hidradenitis-suppurativa/ ##inflammation #acne #AntiInflammatory #antioxidant #Bacterial #chronic #diet #FattyAcids #Fish #HidradenitisSuppurativa #ImmuneSystem #Meat #Mediterranean #MediterraneanDiet #MentalHealth #nutrients #nutrition #OliveOil #OxidativeStress #psoriasis #Research #skin #stress #VitaminD

Mediterranean diet shows promise in easing psoriasis, acne, and hidradenitis suppurativa https://www.diningandcooking.com/1967075/mediterranean-diet-shows-promise-in-easing-psoriasis-acne-and-hidradenitis-suppurativa/ ##inflammation #acne #AntiInflammatory #antioxidant #Bacterial #chronic #diet #FattyAcids #Fish #HidradenitisSuppurativa #ImmuneSystem #Meat #Mediterranean #MediterraneanDiet #MentalHealth #nutrients #nutrition #OliveOil #OxidativeStress #psoriasis #Research #skin #stress #VitaminD

Acne is a common skin condition, but what if those persistent bumps, painful lumps, or recurring skin lesions aren’t acne at all?
https://retroworldnews.com/is-it-really-acne-understanding-hidradenitis-suppurativa-and-how-to-manage-it/

#HidradenitisSuppurativa #AcneAwareness #SkinHealth #ChronicSkinCondition #HSManagement #Dermatology #SkinCareTips #HealthEducation #InflammatorySkinDisease #PatientSupport #SkinConditions #AcneVsHS #LivingWithHS #SkinCareCommunity #DermatologistAdvice #HealthAndWellness #SelfCare #SkinAwareness #ChronicIllness #MentalHealthMatters #beauty

Acne is a common skin condition, but what if those persistent bumps, painful lumps, or recurring skin lesions aren’t acne at all?
https://retroworldnews.com/is-it-really-acne-understanding-hidradenitis-suppurativa-and-how-to-manage-it/

#HidradenitisSuppurativa #AcneAwareness #SkinHealth #ChronicSkinCondition #HSManagement #Dermatology #SkinCareTips #HealthEducation #InflammatorySkinDisease #PatientSupport #SkinConditions #AcneVsHS #LivingWithHS #SkinCareCommunity #DermatologistAdvice #HealthAndWellness #SelfCare #SkinAwareness #ChronicIllness #MentalHealthMatters #beauty

Acne is a common skin condition, but what if those persistent bumps, painful lumps, or recurring skin lesions aren’t acne at all?
https://retroworldnews.com/is-it-really-acne-understanding-hidradenitis-suppurativa-and-how-to-manage-it/

#HidradenitisSuppurativa #AcneAwareness #SkinHealth #ChronicSkinCondition #HSManagement #Dermatology #SkinCareTips #HealthEducation #InflammatorySkinDisease #PatientSupport #SkinConditions #AcneVsHS #LivingWithHS #SkinCareCommunity #DermatologistAdvice #HealthAndWellness #SelfCare #SkinAwareness #ChronicIllness #MentalHealthMatters #beauty

Acne is a common skin condition, but what if those persistent bumps, painful lumps, or recurring skin lesions aren’t acne at all?
https://retroworldnews.com/is-it-really-acne-understanding-hidradenitis-suppurativa-and-how-to-manage-it/

#HidradenitisSuppurativa #AcneAwareness #SkinHealth #ChronicSkinCondition #HSManagement #Dermatology #SkinCareTips #HealthEducation #InflammatorySkinDisease #PatientSupport #SkinConditions #AcneVsHS #LivingWithHS #SkinCareCommunity #DermatologistAdvice #HealthAndWellness #SelfCare #SkinAwareness #ChronicIllness #MentalHealthMatters #beauty

Boils for 10 years?! The shocking truth doctors miss

Christopher Sayed is a dermatologist.

https://youtube.com/shorts/aRQhvxCgYkI

Listen here: https://kevinmd.com/podcast

#diagnosednotdismissed #HSwarrior #misdiagnosedforyears #findyourhscommunity #flareFighter #livetheihadhs #youarenotalone #morethanboils #healthtok #earlydiagnosismatters #HidradenitisSuppurativa

Hidradenitis suppurativa: The silent suffering no one talks about

Christopher Sayed is a dermatologist.

https://youtube.com/shorts/bweGkusPG6o

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #SkinCondition #ChronicPain #Dermatology #InvisibleIllness #HealthAwareness #Stigma #Support #LivingWithHS #SkinHealth #HiddenStruggles

Hidradenitis suppurativa: The silent suffering no one talks about

Christopher Sayed is a dermatologist.

https://youtube.com/shorts/bweGkusPG6o

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #SkinCondition #ChronicPain #Dermatology #InvisibleIllness #HealthAwareness #Stigma #Support #LivingWithHS #SkinHealth #HiddenStruggles

Hidradenitis suppurativa: The silent suffering no one talks about

Christopher Sayed is a dermatologist.

https://youtube.com/shorts/bweGkusPG6o

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #SkinCondition #ChronicPain #Dermatology #InvisibleIllness #HealthAwareness #Stigma #Support #LivingWithHS #SkinHealth #HiddenStruggles

Hidradenitis suppurativa: The silent suffering no one talks about

Christopher Sayed is a dermatologist.

https://youtube.com/shorts/bweGkusPG6o

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #SkinCondition #ChronicPain #Dermatology #InvisibleIllness #HealthAwareness #Stigma #Support #LivingWithHS #SkinHealth #HiddenStruggles

Request for Mutual Aid
(Links at end of post)
.
My partner and spouse wrote this fundraiser for our family because I haven't the brain power to do this.
.

Please read, if you can:
.

We are a family of five living in Bath, #Michigan. All five of us are disabled in different ways, but we have found a way to get by and thrive for many years. However, one parent had a sudden severe downturn of health at the beginning of this summer that has left us unable to continue getting the income that we need. The parent has several chronic medical conditions, #HidradenitisSuppurativa , Elhers Danslos Syndrome, and #POTS, as well as #autism

An infection brought home from school in May has led to a cascading series of medical emergencies, which resulted in hospitalization and a surgical procedure for a deep abscess in the thigh which will take months to heal, as well as physical therapy. The parent was bedbound for over a month, causing me to lose my job. I will still be unable to get a job for several more weeks, but I will be able to resume substitute teaching once the school year begins again and the children return to school in September.

We have to get through one month without being able to work, and we are asking for help to support our family through this difficult period, so that the parent can remain on bed rest and fully recover from the medical procedure.

Our family's chronic health conditions require a very specific diet to prevent events like this. Our children also have many severe food #Allergies This makes us unable to utilize food banks. I have already tried going to many different pantries. There was only one thing that we could eat, and we could not choose what we got, so we ended up with a lot of food that we had to throw away. This is the first abscess like this that the parent has had in four years, and it came when we were low on food and had to eat something we normally would not.

We greatly appreciate any who take the time to read this. We are also unable to get basic household needs and are having to get by without many medications and other essentials. We have an Amazon wish list with household items that we need but will not be able to buy for several months, which you can find here:

#Trans #Disability #Disabled #COVID #Autistic #MentalHealth #Crisis #MutualAid #Fundraiser #CommunityCare #ChronicIllness

https://www.amazon.com/hz/wishlist/ls/2JWR2Z5DYS03F?ref_=wl_share

For direct funds here is our
PayPal link:

https://paypal.me/DFlexer?country.x=US&locale.x=en_US

My autistic grandfather dutifully cared for his wife (the grandmother I never got to meet) at the end of her fight with breast cancer.

Grandma Mary really wanted marijuana joints to cope with her pain, but the doctors only permitted her to use morphine (this was in the late 1970's). She couldn't administer it to herself so my grandfather injected it into her veins for her.

He told me this story one summer day when I was over at his apartment with my father. I was 10 years old at that time .

What prompted the story was grandpa Bill giving us a tour of his tackle box. I saw a syringe next to the rubber worms, and I asked what it was for. He explained that the fake worms injected with air made them seem life like to the fish, they'd wriggle about in the water, and were more likely to get a bite.

Then, he paused and told the story of that needle, and what it was originally for. After grandma Mary died, he kept all those remnant from that time, and everything seemed to have a repurpose . I watched him grimace as he took the morphine syringe in his hand and he angrily snapped it in two, and threw it away.

That was the first time I ever seen the gentle man look angry, actually, full of rage.

Only now, as I lay here in the hospital bed, after having a dose of Dilaudid, as the burning hot pain relief sears through my veins and breaks open my weary heart. I feel my grandmother, and I didn't have to meet her, to begin to feel her pain.

I feel grandpa's pain too. Repurposing the hurtful memories, the tools we are are actually given , when what we needed was something totally different. The autistic tendency to survive and "make due" with rampant unfairness.

#memories #pain #chronicIllness #cancer #autism #GoldenGeneration #millenials #thoughts #family #FamilyHistory #hidradenitisSuppurativa

Cautiously "good" news:

My partner checked the area and redness has gone down. It is swollen but not as red. No streaking. Took my 12th dose of Keflex (40 doses total is the full course). Basically, the point at which I was going to go to the hospital is if there was no positive change in the direction of healing or it got worse.

To go to the hospital, we are looking for signs of worsening such as :

1) Increased redness + increased swelling

2) Red streaks moving outward to new tissue

3) fever

4) disorientation

The reason why it's wait and see at home, has to do with the fact that my immune system has been put to sleep from the Prednisone (why healing from infection has been so slow), and so I can catch a plethora of things at the hospital including COVID.

This could be so so so much worse,

KNOCK ON WOOD.

Please still keep me in your thoughts, I'm not out of the hot water quite yet 🥺

Let's hope for reduced swelling by tomorrow morning 🤞

#HidradenitisSuppurativa #Immunocompromised #immuneSystem #cellulitis #ChronicIllness #Pain #anxiety #hospital #HealthCare

Another coloring/activity sheet:

"All the feels inside
PAIN
you can write them here"

How you write them is up to you-- pain as an acronym, all the P, A, I, N words in each respective letter... I dunno, whatever you wanna do with it.

I'm going to be filling this out for myself later.

#ColoringPages #ActivitySheet #Pain #ChronicIllness #Emotions #HidradenitisSuppurativa #Lonely #Healing #FreeArt

The world is too much right now. I been trying to cope with all the sorts of pain I got rushing through me today. It's wanting to come through as self-soothing art.

I made a coloring page for you to color, if you want to.

Remember, somebody loves you 💜🌻

#Pain #HidradenitisSuppurativa #anxiety #fear #grief #ChronicIllness #love #coloringPages

#HidradenitisSuppurativa anxiety is high in me today

I don't even think #anxiety is an accurate label for what I'm actually feeling, though.

It's like a slowly-descending terror, the sort that comes from insights on one's own current moment and feelings of inevitable catastrophe or doom, and the inability to escape or change its course.

For example:

a new bump or nodule felt under the skin while bathing can cause a nervous twinge in the back of my mind, like; what will this develop into? Then, after such a discovery, my logical course of action is to get out the anti-inflammatory ointments and the antibiotic creams and immediately apply them to the area(s) of the suspect lump(s).

I already use hibicleanse as body wash everytime I shower. #Hibicleanse kills normal #bacteria and #microbes on the skin, like #staph, #strep, #candida (yeast). To the average person with a healthy immune system, these microbes on small, balanced amounts don't trigger a response to go to 'war' from the #immuneSystem. My immune system however, is distrustful of whatever is on my skin, to the point that even the very texture of clothing can set it off, and my skin develops nodules-- not on the surface like #acne, which is usually a reaction to what's in the pore, oil glands, etc, but rather, a pocket of fluid forms in the nodule, sort of like a blister, almost, and it turns to pus (note: acne is plenty awful on its own-- I do NOT want to minimize that condition, my own brother had it awful).

It's also important to note that for every one with HS there can be different completely factors and triggers for each person, some being hormonal only, some environmental, or diet only or a combination of factors, including lifestyle, and what are considered #comorbid conditions and diseases that intersect with HS and or make it worse.

For me personally, it's a combination of environmental toxins, food and allergies and unregulated blood glucose levels, that and GI disease and Elhers Danslos Syndrome ( #EDS) and #POTS. Some of these intersect with #Autism and the nervous system which also are things that affect me and the severity of my conditions.

So, back to the HS infection risk--
Remember how I wrote that I must wash with hibicleanse all over my body?

Well, if I don't get rid of most of my skin surface microbes, the microbes could infect and culture the fluid-filled nodules and could develop (but not always in some people) a serious infection. This is where the slowly descending terror factors in. Once the process of infection starts, it's already in its path, and there are sometimes very limited ways to act, and every option puts me at the mercy of the medical system and the home environment I live in. Mobility disabilities and developmental disabilities complicate this all, because it takes much executive functioning to keep on top of skin care AND taking a bunch of pills that require different times and procedures.

I might edit this later, but I have to go an eat.
Thanks for reading if you made it this far

#HidradenitisSuppurativa anxiety is high in me today

I don't even think #anxiety is an accurate label for what I'm actually feeling, though.

It's like a slowly-descending terror, the sort that comes from insights on one's own current moment and feelings of inevitable catastrophe or doom, and the inability to escape or change its course.

For example:

a new bump or nodule felt under the skin while bathing can cause a nervous twinge in the back of my mind, like; what will this develop into? Then, after such a discovery, my logical course of action is to get out the anti-inflammatory ointments and the antibiotic creams and immediately apply them to the area(s) of the suspect lump(s).

I already use hibicleanse as body wash everytime I shower. #Hibicleanse kills normal #bacteria and #microbes on the skin, like #staph, #strep, #candida (yeast). To the average person with a healthy immune system, these microbes on small, balanced amounts don't trigger a response to go to 'war' from the #immuneSystem. My immune system however, is distrustful of whatever is on my skin, to the point that even the very texture of clothing can set it off, and my skin develops nodules-- not on the surface like #acne, which is usually a reaction to what's in the pore, oil glands, etc, but rather, a pocket of fluid forms in the nodule, sort of like a blister, almost, and it turns to pus (note: acne is plenty awful on its own-- I do NOT want to minimize that condition, my own brother had it awful).

It's also important to note that for every one with HS there can be different completely factors and triggers for each person, some being hormonal only, some environmental, or diet only or a combination of factors, including lifestyle, and what are considered #comorbid conditions and diseases that intersect with HS and or make it worse.

For me personally, it's a combination of environmental toxins, food and allergies and unregulated blood glucose levels, that and GI disease and Elhers Danslos Syndrome ( #EDS) and #POTS. Some of these intersect with #Autism and the nervous system which also are things that affect me and the severity of my conditions.

So, back to the HS infection risk--
Remember how I wrote that I must wash with hibicleanse all over my body?

Well, if I don't get rid of most of my skin surface microbes, the microbes could infect and culture the fluid-filled nodules and could develop (but not always in some people) a serious infection. This is where the slowly descending terror factors in. Once the process of infection starts, it's already in its path, and there are sometimes very limited ways to act, and every option puts me at the mercy of the medical system and the home environment I live in. Mobility disabilities and developmental disabilities complicate this all, because it takes much executive functioning to keep on top of skin care AND taking a bunch of pills that require different times and procedures.

I might edit this later, but I have to go an eat.
Thanks for reading if you made it this far

How many people with worsening #HidradenitisSuppurativa flares because of this polluted air?

My skin is weeping

I can't show you pictures because they are graphic and they are where the sun don't shine.

My lungs are a mess, my GI tract is a mess, my skin is scaring me.

FYI --
#KarlMarx had HS, and the worst places he had it was right up around his scrotum and cheeks. He was freaking miserable. There's lots written on his condition. He lived next to heavily polluted areas too.

Also, I wish the worst case of HS on the world's #Billionaires

#Marxism #Communism #industrialization #consequences #pain #pollution #ClimateCrisis #ClimateChange

@Radical_EgoCom

I make it a point to point out how incredibly fucked up everything is.

I now pass the time, in my long hours upon hours of level 10 pain, "trolling" executives and HR people on LinkedIn with reality. I also make posts with hashtags on LinkedIn with stuff I've screenshotted from you.

These people need their bubble popped. This societal abscess needs drained already. Speaking of which, the stress from all their Bullshit gives me literal genital abscesses. I know TMI, I have #HidradenitisSuppurativa and stress makes it flare as does pollution. That's another thing, the amount of health problems I have because of executive asshole colonizers.

I never let them forget it.

1/2 Just moved instances so it's time for another #introduction. I'm a multiply #disabled #Christian woman. Also #asexual/#aromantic. I'm #blind, #autistic, and have lots of #ChronicIllnesses including #IdiopathicIntracranialHypertension, #EmptySellaSyndrome, #HidradenitisSuppurativa, and #fibromyalgia, as well as an undiagnosed stomach disorder. I live with my mom, stepdad, 5 dogs, lots of cats, and a chicken. We're in southeast Texas near Houston now but about to move to near San Antonio.

1/2 Just moved instances so it's time for another #introduction. I'm a multiply #disabled #Christian woman. Also #asexual/#aromantic. I'm #blind, #autistic, and have lots of #ChronicIllnesses including #IdiopathicIntracranialHypertension, #EmptySellaSyndrome, #HidradenitisSuppurativa, and #fibromyalgia, as well as an undiagnosed stomach disorder. I live with my mom, stepdad, 5 dogs, lots of cats, and a chicken. We're in southeast Texas near Houston now but about to move to near San Antonio.

1/2 Just moved instances so it's time for another #introduction. I'm a multiply #disabled #Christian woman. Also #asexual/#aromantic. I'm #blind, #autistic, and have lots of #ChronicIllnesses including #IdiopathicIntracranialHypertension, #EmptySellaSyndrome, #HidradenitisSuppurativa, and #fibromyalgia, as well as an undiagnosed stomach disorder. I live with my mom, stepdad, 5 dogs, lots of cats, and a chicken. We're in southeast Texas near Houston now but about to move to near San Antonio.

1/2 Just moved instances so it's time for another #introduction. I'm a multiply #disabled #Christian woman. Also #asexual/#aromantic. I'm #blind, #autistic, and have lots of #ChronicIllnesses including #IdiopathicIntracranialHypertension, #EmptySellaSyndrome, #HidradenitisSuppurativa, and #fibromyalgia, as well as an undiagnosed stomach disorder. I live with my mom, stepdad, 5 dogs, lots of cats, and a chicken. We're in southeast Texas near Houston now but about to move to near San Antonio.

1/2 Just moved instances so it's time for another #introduction. I'm a multiply #disabled #Christian woman. Also #asexual/#aromantic. I'm #blind, #autistic, and have lots of #ChronicIllnesses including #IdiopathicIntracranialHypertension, #EmptySellaSyndrome, #HidradenitisSuppurativa, and #fibromyalgia, as well as an undiagnosed stomach disorder. I live with my mom, stepdad, 5 dogs, lots of cats, and a chicken. We're in southeast Texas near Houston now but about to move to near San Antonio.

The misery of hidradenitis suppurativa and the importance of raising awareness

It's surprising that more people aren't aware of hidradenitis suppurativa (HS) when it's such a debilitating disease. HS is characterized by painful nodules or abscesses that can resemble boils.

Christopher Sayed is a dermatologist.

https://youtu.be/x1xFxvoLW84

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #Awareness #SilentSuffering #SkinConditions #RaiseAwareness #PatientCare #MedStudent #MedSchool

The misery of hidradenitis suppurativa and the importance of raising awareness

It's surprising that more people aren't aware of hidradenitis suppurativa (HS) when it's such a debilitating disease. HS is characterized by painful nodules or abscesses that can resemble boils.

Christopher Sayed is a dermatologist.

https://youtu.be/x1xFxvoLW84

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #Awareness #SilentSuffering #SkinConditions #RaiseAwareness #PatientCare #MedStudent #MedSchool

The misery of hidradenitis suppurativa and the importance of raising awareness

It's surprising that more people aren't aware of hidradenitis suppurativa (HS) when it's such a debilitating disease. HS is characterized by painful nodules or abscesses that can resemble boils.

Christopher Sayed is a dermatologist.

https://youtu.be/x1xFxvoLW84

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #Awareness #SilentSuffering #SkinConditions #RaiseAwareness #PatientCare #MedStudent #MedSchool

The misery of hidradenitis suppurativa and the importance of raising awareness

It's surprising that more people aren't aware of hidradenitis suppurativa (HS) when it's such a debilitating disease. HS is characterized by painful nodules or abscesses that can resemble boils.

Christopher Sayed is a dermatologist.

https://youtu.be/x1xFxvoLW84

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #Awareness #SilentSuffering #SkinConditions #RaiseAwareness #PatientCare #MedStudent #MedSchool

The misery of hidradenitis suppurativa and the importance of raising awareness

It's surprising that more people aren't aware of hidradenitis suppurativa (HS) when it's such a debilitating disease. HS is characterized by painful nodules or abscesses that can resemble boils.

Christopher Sayed is a dermatologist.

https://youtu.be/x1xFxvoLW84

Listen here: https://kevinmd.com/podcast

#HidradenitisSuppurativa #Awareness #SilentSuffering #SkinConditions #RaiseAwareness #PatientCare #MedStudent #MedSchool

My #hidradenitissuppurativa did a bad bad thing and I feel like shit and am a bit afraid that in gonna get a sepsis 😖😬 (one of my big fears with HS)
I have no fever, so it's still okay, but I'm going to the doctor tomorrow....
... and if im unlucky im gonna need surgery again 😖
I hate this shit 🥺

So much body pain today and for the last few days. No matter what I do it hurts, painkillers do nothing.
And my #hidradenitissuppurativa is also acting up, can barely sit upright...
Fun with #mecfs and no end in sight 😖

My #introduction post: I'm #Autistic & was diagnosed with "hyperactivity" before #ADHD existed in the DSM. I self-diagnosed in my 20s, back in the early 2000s, but only got an official diagnosis (privately, as the NHS in my area was useless for AFAB adults) in January 2020. In addition, I'm #dyspraxic and #dyscalculic too.

I'm #disabled and #ChronicallyIll - my main diagnoses are #PoTs , #CentralSleepApnea , #Endometriosis , #InterstitialCystitis and #HidradenitisSuppurativa (among others).

As well as being #ActuallyAutistic , I'm an #atheist , a #humanist and #demisexual , #bisexual and #nonbinary .

I love the #Marvel character #TheWinterSoldier and the actor Sebastian Stan, #Rats , #knitting , #crochet , #tunisiancrochet, #writing and anything #medicine or #scientific . #Learning is definitely a #spin (and clearly I love hashtags too 😂).

If I say something that seems off, please just ask me to clarify. I always try to say exactly what I mean, but that doesn't always translate in reality.

Wondering if anyone here shares my #ChronicIllnesses or #RareDiseases. I'd like to connect if so. I have #EmptySellaSyndrome, #IdiopathicIntracranialHypertension, #HidradenitisSuppurativa, #migraines, #LaryngopharyngealReflux, #GastroesophagealRefluxDisease, #fibromyalgia, and #OpticNerveHypoplasia. I won't list all the more common or smaller things that have come along with them. I'm newly diagnosed with the first 3, so I'd like to learn from someone who's been dealing with them for longer.

Wondering if anyone here shares my #ChronicIllnesses or #RareDiseases. I'd like to connect if so. I have #EmptySellaSyndrome, #IdiopathicIntracranialHypertension, #HidradenitisSuppurativa, #migraines, #LaryngopharyngealReflux, #GastroesophagealRefluxDisease, #fibromyalgia, and #OpticNerveHypoplasia. I won't list all the more common or smaller things that have come along with them. I'm newly diagnosed with the first 3, so I'd like to learn from someone who's been dealing with them for longer.

Wondering if anyone here shares my #ChronicIllnesses or #RareDiseases. I'd like to connect if so. I have #EmptySellaSyndrome, #IdiopathicIntracranialHypertension, #HidradenitisSuppurativa, #migraines, #LaryngopharyngealReflux, #GastroesophagealRefluxDisease, #fibromyalgia, and #OpticNerveHypoplasia. I won't list all the more common or smaller things that have come along with them. I'm newly diagnosed with the first 3, so I'd like to learn from someone who's been dealing with them for longer.

Wondering if anyone here shares my #ChronicIllnesses or #RareDiseases. I'd like to connect if so. I have #EmptySellaSyndrome, #IdiopathicIntracranialHypertension, #HidradenitisSuppurativa, #migraines, #LaryngopharyngealReflux, #GastroesophagealRefluxDisease, #fibromyalgia, and #OpticNerveHypoplasia. I won't list all the more common or smaller things that have come along with them. I'm newly diagnosed with the first 3, so I'd like to learn from someone who's been dealing with them for longer.

Wondering if anyone here shares my #ChronicIllnesses or #RareDiseases. I'd like to connect if so. I have #EmptySellaSyndrome, #IdiopathicIntracranialHypertension, #HidradenitisSuppurativa, #migraines, #LaryngopharyngealReflux, #GastroesophagealRefluxDisease, #fibromyalgia, and #OpticNerveHypoplasia. I won't list all the more common or smaller things that have come along with them. I'm newly diagnosed with the first 3, so I'd like to learn from someone who's been dealing with them for longer.