#Congenital adrenal hyperplasia

[intersex-support]

Help an intersex family in Gaza!

Hi everyone. I'd like to share about a fundraiser that is very important to me. A good friend of mine is in contact with the organizers.

(Described in alt).

Their story:

"Hello, my name is Abeer. I'm organizing this fundraising campaign from Belgium on behalf of my family, who currently live in Gaza. 

Since October 7, all families in Gaza have been subjected to genocide. My family is one of those families that has had to flee its own home several times because of the threat of regular attacks. 

After two months, my family decided to return home and take the risk of being bombed at any moment rather than stay in the street. Our 4-floor building now contains over 100 people who have fled from different parts of Gaza. We always open our hearts for our own people, but we can't do it without your help and support. 

My parents, Kamal (53) and Moukaram (51), are suffering from the war because of their age and health. My brother Suliman, his wife Rawan Abualnaja and their two-year-old daughter Bisan are trying to stay strong, but it's complicated by their little daughter's enormous needs. My other siblings who are not married are Mohammed 25, Inas 22, Ibrahim 17, Abdallah 15.

My family medical condition during the war:

My father suffers from delusional disorders. He can't work or help my family financially. Mohammed and Ibrahim suffer from a chronic disease, congenital adrenal hyperplasia. It is difficult for them to obtain medication in Gaza. One of their medicines has not been available in Gaza for two years. During the war, they couldn't get their medicines because they simply didn't exist anymore. My family members are still suffering. They don't want to be potential victims. They want to escape death and live like other families on the planet.

 On 01/01/2024, they attacked the local mosque and the missile failed to explode and ended up in front of my family's house. My family is in danger and the missile will explode any second.

Since then, my family has decided to be evacuated from Gaza because of the senseless attack on our city. Please help me evacuate my family to Egypt so that they can rebuild their lives in peace.

I've been in Belgium for over five years. I feel useless because I haven't been able to do much except try to help them with their daily living expenses. That's why we created this campaign. We're raising funds to evacuate my family to Egypt, a place that offers a glimmer of hope and stability. However, the cost of the evacuation is high, hence our call for crowdfunding.

Every contribution makes a difference The funds we raise will be used for :

- Evacuation from Gaza for both families (Rafah border crossing fees for 9 people total)  - Two months of temporary living expenses in Egypt, including food, shelter, and transportation  - Passport fees  - Food expences untill they leave Gaza 

No matter how small your contribution, it can make all the difference in breaking the cycle of violence and uncertainty. By supporting our campaign, you are offering a lifeline to our families so that they can rebuild their lives, heal from their trauma and make a fresh start in a safe and secure environment. Please leave a comment and share our campaign with your friends, so we can reach more people and make a bigger impact. Together, we can make a difference!"

They are using a French platform called Papayoux Solidarite instead of GoFundMe. Abeer also has a Paypal account for non European donors.

They are currently at 33 588,78 €/ 50,000 €.

Let's see if we can get them to 34,000 today. Any donation matters, even $1 or $2 donations can add up.

We need to help them meet their goal. Intersex liberation means intersex liberation everywhere--it is so important that we show up in solidarity. Those of us living with CAH know how dangerous salt wasting crises are without medication, and how important it is to urgently help Mohammed and Ibrahim get access to the medications they need to support their CAH. Intersex solidarity means that we need to show up and support intersex people facing genocide.

If you can't donate, please share. Consider doing an art raffle to raise money. Do whatever you can to help this family because it is urgent, and we need to act in solidarity with them now and make sure that the intersex community is here to support them!

[dhddmods]

Some intersex flags! (Part 2)

Part 2 of making flags for intersex traits and variations that were flagless! (Part one is here.) There will be a part 3 & 4 and then all the main intersex traits/variations will officially have flags.

Please read (and reblog) our intersex guide. It is so important to understand intersex people, their bodies, and their health!

Accessory Ovary

The flag is based on the uterus didelphys and polyorchidism flags. The A is meant to represent the name of this variation. The three circles are meant to represent ovaries. The plus symbol is meant to stand for people who have more than one accessory ovary (aka 3+ ovaries.)

Supernummary Ovary

The flag is based on the uterus didelphys and polyorchidism flags. The S is meant to represent the name of this variation. The three circles are meant to represent ovaries. The plus symbol is meant to stand for people who have more than one accessory ovary (aka 3+ ovaries.)

Cervical Duplication

The flag is based on the uterus didelphys flag. In the center of the flag, the shape is meant to vaguely resemble a uterus with two cervixes.

Cervical Duplication + Uterus Didelphys

The flag is based on the uterus didelphys flag, with the shapes being changed to vaguely resemble two uteruses with cervixes.

Cervical Agenesis

The flag is based on the MKRH Syndrome flag. The symbol is meant to represent a uterus with an X over where the cervix would be.

Cervical Hypoplasia

The flag is based on MKRH Syndrome flag. The symbol is meant to represent a uterus with a minus symbol over where the cervix would be, representing its smaller size.

Uterine Hypoplasia

The flag is based on MKRH Syndrome flag, with a minus with a minus symbol, representing its smaller size.

Anorchia

The flag is based on the ovarian agenesis flag. The circle with the X represents a lack of gonads.

Monorchidism

The flag is based on the ovarian agenesis flag. The circle in the symbol represents the testicle itself. The 1 represents how there is only one gonad, and the M represents the name of this variation.

Unilateral Ovarian Agenesis

The flag is based on the ovarian agenesis flag. The circle in the symbol represents the ovary itself. The 1 represents how there is only one gonad, and the U represents the name of this variation.

Aromatase Excess Syndrome (AEXS/AES)

The flag uses the hyperestrogenism symbol, as it is a form of hyperstrogenism. The shades of pink represent the feminizing effects of the variation. The rainbow and monochrome coloring represents the gender spectrum, and how any gender can have this variation.

Classic CAH (Simple-Virilizing)

The flag is based on the CAH flag. The SV represents the name of this variation.

Classic CAH (Salt-Wasting)

The flag is based on the CAH flag. The SW represents the name of this variation.

Nonclassic CAH

The flag is based on the CAH flag. The NC represents the name of this variation.

Leydig Cell Hypoplasia (LCH)

The shades of blue represent the masculinizing effects of testosterone. The grey represents hypoandrogenism, and low levels of androgens. The grey circle represents the testes, and the underdeveloped/absent leydig cells within them.

17-KSR Deficiency

The purple and yellow represents that this variation is a form of intersex. The shades of grey surrounding the blue represents the "barrier" preventing androstenedione from converting into testosterone. The Ks and 17 represents the name of this variation.

Aromatase Deficiency

The purple and yellow represents that this variation is a form of intersex. The shades of blue represents the hyperandrogenism, and the pink surrounded by grey represents hypoestrogenism. The AD represents the name of this variation.

Mild Androgen Insensitivity Syndrome (MAIS)

The flag is based on the AIS flag. The M represents the name of this variation.

Partial Androgen Insensitivity Syndrome (PAIS)

The flag is based on the AIS flag. The Ps represents the name of this variation.

Complete Androgen Insensitivity Syndrome (CAIS)

The flag is based on the AIS flag. The Cs represents the name of this variation.

[saltyfoxes-art]

Glaceon calls herself demigirl and has the intersex variation CAH. They consider themself to be cistrans due to her relationship with her AGAB, gender, and sex.

SHE/THEY

[hiiragi7]

Wondering why PCOS is not considered medically to be under the CAH umbrella (since CAH is a group of conditions involving hyperandrogenism), does anyone happen to know the reason?

Is it the vagueness regarding the cause of PCOS, is it the amount of misunderstanding and misinformation surrounding PCOS, is it intersexism and misogyny? Or even a combination of these?

Looking at the literature, PCOS is indistinguishable from CAH without extensive bloodwork, and often CAH is misdiagnosed as PCOS due to less widespread knowledge of not only CAH's existence (despite it being extremely common) but also due to doctors rarely ever testing for anything that is not 21-OHD, if they decide to run tests at all. (Many PCOS patients are diagnosed without any tests or with only an ultrasound to check for ovarian cysts, which is not actually useful as any kind of evidence towards a PCOS diagnosis at all)

In fact, 3bHSD CAH at one point was even considered to be a type of PCOS rather than CAH. If the two are so similar, and CAH is already an umbrella term, why the distinction between PCOS and CAH at all?

If it's due to treatment implications, that doesn't seem to work because treatment implications are different even within different variations within the CAH umbrella and even further within the same CAH variation. My treatment needs and goals are different from someone with another CAH enzyme deficiency, because the location of the deficiency on the steroid pathway changes a lot about what your symptoms are and how to manage it. Someone with 3bHSD CAH may build up pregnenolone, while someone with 21-OHD CAH may build up progesterone, for example, and these can cause very different outcomes for physical health and needs. There's also vastly different implications between classic, non-classic, and salt-wasters.

Us all being lumped under CAH has never stopped us from accessing the different treatment we need for whichever variation we have. Being grouped under an umbrella label does not mean we are all suddenly the exact same and have the same needs. This is true across all umbrella diagnoses and across spectrum disorders, and CAH is not any different.

A person with XY chromosomes and 3bHSD CAH may have ambiguous genitalia while a person with XX chromosomes and 3bHSD CAH may have completely "typical-appearing" or only slightly virilized genitals, some people with CAH may be infertile while others have no issues with fertility, some have ovarian cysts and some do not, some will go through "typical" puberty and others will have ambiguous or "opposite-sex" puberty, so on.

What vast amount of differences are there between PCOS and CAH that are not present between 21-OHD and 3bHSD, 11-beta, and StAR? PCOS and NCAH can even be more alike to each other than CAH variations can be to other CAH variations.

When we have studies which struggle to differentiate PCOS from CAH even on a biochemical level, why are we so confident in saying that PCOS is not yet another CAH presentation, or that it does not belong underneath that umbrella?

TERFs don't touch this post, I don't want to hear your shit today.

[weirdstrangeandawful]

TW: medical gaslighting(?)

This is a total long shot but does anyone know if (N)CAH can be diagnosed if my body no longer has the ability to produce sex hormones as a result of (voluntary) medical intervention for unrelated issues?

I'm trying to get diagnoses or at least treatment for some of my other disabilities and symptoms but many times I'll explain that a symptom has been going on for a while and they'll blame it on possible CAH and say that I should have thought that before I got the other medical intervention (that was absolutely necessary and needed to be done as soon as possible for quality of life reasons). They'll do this even if I'm pretty sure it's EDS-related and not possible-CAH-related

It feels like an easy way out of actually treating me by saying 'oh well you should have thought of that earlier. Nothing we can do if we can't rule out CAH'

I've been fully dropped from my endocrinologist's patient list so I need a pretty convincing argument to get a new referral to a new endocrinologist. Is there any way this can get diagnosed without my body producing sex hormones? Even if it's just to make sense of historical symptoms that have persisted ro caused long-term damage.

[roguetelepaths]

I'm still absolutely dumbfounded by the fact that no doctor ever told me people with my intersex condition often need more salt than the average person— I had to find that out from my partner doing research to make an OC with the same condition

[bobbyditto77]

Hey!!! Did you know June is *also* Congenital Adrenal Hyperplasia awareness month??? It is an invisible disability that affects SO MUCH! But mainly- CAH means your adrenal glands don't work! (Those make cortisol, which combats STRESS mainly on the physical.) Even doctors and EMTs do not know about this condition because it is really rare!

[shinigami-social]

Is the intersex community ready to stop saying “CAH” when they mean NCAH only? Can you stop doing that? Can you be specific when talking about a group of medical conditions that actually have several differences depending on which type you have? Can you not pull the “disorder name becomes synonymous with most common type of the disorder” because it really feels like we are veering into the same thing people have done to EDS just default meaning hEDS, and both of these are annoying as fuck.

[trans-axolotl]

do you know anything about late-onset congenital adrenal hyperplasia? i just found it on my file while looking for something else. i have an unrelated surgery coming up and i'm trying to figure out if this could have any effect on how my body handles that, especially wrt cortisol. but i can't find much on it at all, particularly how it affects ppl beyond infertility and sex characteristics. my impression is that at least the classic variant of it sounds like something intersex-related so i thought you might have heard of it. i remember asking my doctors for more information and they were basically like "don't worry about it unless you wanna get pregnant :)"

Hey anon.

So, late onset congenital adrenal hyperplasia, also called nonclassic congenital adrenal hyperplasia, is considered an intersex variation. (If you search NCAH on my blog or on @intersex-support, you might find some other posts about it). Because of the way it affects our testosterone levels and secondary sex characteristics outside of what is typically considered "female", late onset CAH is intersex, even if late onset CAH hasn't caused changes in genitalia.

Of course, there's no pressure to instantly start referring to yourself as intersex, or start participating in intersex community, but know that you are welcome here, and there are a lot of people who understand what it's like. I also have CAH, and I'm always happy to talk about it with anyone else. I know that it can be sort of shocking or overwhelming to get that information for the first time. Any feelings you have about it are completely valid. You can take as much time as you need to process. The community is here for you whenever you're ready.

In terms of surgery and CAH, there are some important considerations. For people with NCAH, there's going to be a range for how each individual makes and processes cortisol and aldosterone. Some people need daily glucocorticoid replacement therapy while others do not. However, even if you do not need daily steroid replacement, some people with NCAH need extra "stress dosing" of glucocorticoids when their body is under physical stress, such as during illness, injury, or surgery. It would be really important to talk to your surgeon, an anesthesiologist, and probably an endocrinologist before the surgery to make sure you know what your cortisol and aldosterone production is and make a plan if you need stress dosing during surgery or surgery recovery.

One book I would recommend for people with CAH is the Parent's Guide to CAH. In a lot of ways this book kind of sucks--it's directed towards parents, uses a lot of cissexist language, and uses a very medicalized model, but has some of the clearest nonacademic writing about what CAH is, how it works, treatment options, and talks about different considerations like surgery, illness, etc.

Please feel free to reach back out with any other questions, whether it's about CAH, intersex stuff, or if you want suggestions on any other resources. Thinking of you, anon, and hope your surgery goes well! 💜💛💜

[battyhillel]

so not only did i possibly go thru igm, but i may actually have cah like i thought and it was hid from me.

great. (sarcasm)

[snapcracklepop-myjoints]

what i want to know is this. theyre using refitted insulin pumps for cortisol pumping. they have studies showing continuous glucose monitoring helps fine-tune corticosteroid dosing for adrenal insufficiency. but ive seen nothing abt ppl doing cortisol pumping using the ??? built in cgm ?????? hello ???

[intersex-support]

hi! im questioning if im intersex (sorta. im like. 98% sure i am lol) but i cant quite find any variations that fit perfectly, though i know that you dont necessarily have to fit Every criteria for a variation. but i also might have EDS, or rather. probably absolutely do, but i missed One criteria in the hEDS diagnostic thing (my skin isnt Super elastic, just a little, but otherwise i am hypermobile) and wasnt diagnosed w hEDS specifically. i also wasnt able to get in with a geneticist to confirm EDS that way (i was pointed in their direction right when covid started so they werent accepting new patients)

anyways my point is, ive heard of CAH X, i think was the name? and from what i could tell its kind of a mix of CAH and EDS symptoms? but i couldnt find anything about it that wasnt super medical so i couldnt really understand it. is it possible you have some information on it? if not thats fine! ty for your time!

Hi anon!

Disclaimer that we cannot diagnose or provider medical advice, but I can absolutely share some information about CAH X.

So, CAH X is a subset of CAH where people have both CAH and Ehlers Danlos Syndrome. Research has only been done on patients with the most common type of CAH, 21-hydroxylase deficiency, and there isn't any info yet about the other rarer CAH subtypes.

CAH X is caused because the gene mutation that causes CAH is located next to another gene that can cause some kinds of EDS. The gene that causes CAH is called CYP21A2. Right next to CYP21A2 is a gene called TNXB, which encodes a protein called Tenascin-X (TNX). Severe TNXB mutations can cause a subtype of EDS called classical-like EDS, and milder mutations can cause hypermobile EDS. So in about 14-15% of people with CAH, there is essentially an overlapping mutation where the genes that cause CAH and the genes that can cause some types of EDS are both mutating at the same time and causing both diagnoses.

In the studies they've done about CAH X, they've found a range of symptoms and clinical presentations, both in terms of CAH and in EDS. There were patients in the study that had NCAH, CAH simple virilizing, and CAH salt wasting. Patients in the study ranged from having hEDS and just having joint hypermobility and joint dislocations, to having cardiac valve problems, gastrointestinal problems, to having clEDS. Most of the studies so far have found that almost all CAH X patients have elastic skin.

In the study, they found that having both CAH and EDS tended to make the impact of EDS worse. They found this out by comparing the people with CAH X compared to their relatives who just had EDS without CAH.

The discovery of CAH X is still very recent, so there's not a ton of research on it yet. I think they're going to keep finding more out about CAH X over the next several years, and keep refining the genetic testing and clinical diagnosis profiles for it.

So overall, CAH X is a subset of CAH where people have both CAH and EDS, and the symptoms of both diagnoses. Here's links to two research papers if people want to read to learn more!

[tortiefrancis]

im getting more and more sure that I have NCAH but I'm too scared to ask for further testing and I don't think my gynecologist would support me on that

[mxanunnakiraymarquez]

To help end intersex genital mutilation, please stop conflating sex traits with gender identity.

A person on social media wrote to me, “I am male?” When I asked if they were a man. I then told them this describes their endosex sex traits since they did not say they had intersex physiology. Then I asked: “What is your gender identity?” I still do not know this person’s gender identity. They would not describe it to me. You see, like most everyone born endosex and cisgender, they were…

[hiiragi7]

Frustrated about how inaccessible and inaccurate so much info about CAH is.

Annoyed with how many people call CAH a condition which only affects females, when it isn't.

Common CAH variations may still show signs in male patients (but are usually deemed "socially acceptable"), and there are CAH variations such as 3bHSD2D where *both sexes may have ambiguous genitals at birth*.

Sick especially of medical resources doing this shit because apparently all they know is what they read off of google about 21-OHD and stopped there. This is just one example of all the shitty misinfo about CAH and other intersex variations online and why it took so long to know basic shit about our body. Even our doctors did not know basic information on CAH and it was pure luck we got moved to an endocrinologist who knew there was more types of CAH than just 21-OHD and tested for them.

Want to know another fun fact? One I did not myself know until very recently despite having diagnosed CAH? Classic CAH is not synonymous with ambiguous genitals at all. In fact, with the type of CAH I have, most female infants are born with mild or no virilization at all and almost all have very low prader scale scores.

And yet ambiguous genitals as a classic CAH symptom are made out to be like it's the biggest sign of classic vs nonclassic CAH even by doctors. Nobody reads the actual fucking literature on this shit.

We've been under the assumption for years that we could not have classic CAH because our genital ambiguity grew over childhood and puberty rather than being born with super obviously ambiguous genitals and that it would've been obvious at birth if it were classic and we would've been diagnosed as an infant. It turns out with the type of CAH we were diagnosed with our experience is actually extremely fucking textbook for classic-type!!

We also assumed that we would've been caught by our country's mandatory CAH screenings as an infant if it were classic - Nope, our CAH variant in the way it presents in us does not cause elevated 17-OHP levels and the infant screenings only test for 21-OHD. It's why as an adult we were missed the first time by CAH screening as well until we ended up with previously mentioned endo who tested for CAH variations that aren't necessarily related to 17-OHP.

I am. So so tired of how nobody seems to know shit about anything intersex-related. I just want to know basic information about my own body like anybody else. I just want my friends to be able to understand themselves without going through this slow, horrible, agonizing process of constantly wondering if you're making it all up in your head or why the doctors are so fucked up or why your body looks and functions the way it does and having no answers.

This information should be so much more easily accessible and spread than it is.

[shahinelected]

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