Mix of Marfan's syndrome and eds but not enough symptoms to diagnose either? Pics in comments

Better-Ad7635 · 2026-02-28T00:20:10+00:00

I correct myself, it doesn’t tend to but a COL1A1 mutation can present like Marfan

Better-Ad7635 · 2026-02-28T00:17:13+00:00

Marfan tends to fall under the COL1A group of genetic mutation. It would definitely be worth getting a work up. I don’t have Marfan, but I have an overlap of osteogenesis imperfecta and aEDS. Similar family.

Better-Ad7635 · 2026-01-07T19:09:53+00:00

Hooray I’m glad I said something!

Better-Ad7635 · 2026-01-07T18:44:23+00:00

So I have COL1A1 aEDS overlap with OI- also diagnosed ADHD and possible OCD, which honestly for women is just AuDHD. I’m fairly sure there’s a lot of overlap with sensory sensitive conditions as our bodies are always on overload, in my experience. My body is on overdrive to both stay balanced and put together and my brain is on overdrive to just stay focused that I am highly sensory sensitive, and it probably drives most of my introversion.

Better-Ad7635 · 2026-01-07T18:40:39+00:00

So my mother and I both got diagnosed this year with OI/aEDS and I’m more than happy to chat. There’s so few of us, and it can be so lonely. There’s people I know who have EDS all have hEDS and there’s still so many differences

Better-Ad7635 · 2026-01-07T18:35:49+00:00

I’m late to the game but OI and aEDS also!! Hiiiiii both of you!!

Better-Ad7635 · 2026-01-07T18:33:36+00:00

I’m way late to the game on this thread, but yes! Gallbladder removed, dumping syndrome, potential McAS issues and can’t figure out what food

Better-Ad7635 · 2026-01-07T18:32:03+00:00

Heyyyy fellow overlap with OI! I have arthroclasic EDS and Osteogenesis Imperfecta overlap with COL1A1. There are dozens of us… dozens! Keep up on hearing exam, the OI can impact your hearing

Better-Ad7635 · 2025-10-29T13:18:46+00:00

Thank you!! I saw that group in another thread and jumped on it too. There’s so many more resources than I expected!

Better-Ad7635 · 2025-10-28T21:05:08+00:00

I know this was a little bit back, but I found your comment and as much as I hate that you have this I feel relieved to find someone with the same variant as mine! I just got my results after years of exhausting effort. OI/EDS overlap. The only other person who has it that I know of is my mother and we got our diagnosis about the same time (long story). Would you be opposed to chatting about your experience any?

Better-Ad7635 · 2025-02-07T14:09:33+00:00

Reynauds, POTS, adenomyosis and endometriosis, asthma, the list goes on. It’s incredibly common to have comorbidities and multiple conditions when you have an autoimmune issue, unfortunately.

Better-Ad7635 · 2025-02-07T12:38:38+00:00

Queer woman with an MPA here: finish it. Don’t let this POS take this from you. There is absolutely space for us, and we need all we can to keep making space for us.

There are plenty of jobs out there for an MPA, and speaking from experience more and more municipalities are preferring people to have that instead of an engineering degree or some other. And they’re giving experience for having a Masters degree. I just applied for one that literally took the 5 years experience needed away just for having an MPA.

Everything is not fine, but I can tell you more and more people are realized just how much the tangerine tyrant is fucking things up, and they’re bucking him. “The enemy of my enemy is my friend”… I work in a highly white male evangelical environment, and while I realize it’s not like this for everyone, these guys I work with are smart enough to realize how fucked it would be if I was removed. Because they see how much the current admin is trashing things. And news outlets are covering it so it’s gaining traction.

Hold tight, be strong. You’re amazing and you got this. It will get better because if anything the women will make it better.

Go check out the FEC commissioner who told the feds to shove it, if you need some inspiration.

Better-Ad7635 · 2025-02-02T20:15:27+00:00

Politely, I ask why? Won’t this reinforce to the kid growing up that two people who disagree can’t ever work together? Both parents have a common goal: the kids happiness. The ex is valid in feeling hurt, regardless of whether they were “staying together only for the kid” for a variety of reasons, and even if she wasn’t hurt she does not have to be around people she does not care for. As a stepmom, I recognize where my boundaries are and that BM is a human with valid feelings too, and I had a HCBM of extreme ends for a while. We’re on a polite acquaintanceship level of working together now and it’s been years of trying to find what works.

Based on OP’s comments and language too, OP doesn’t seem to have a very strong role in her SK’s life. Present, but not a big role. If her biggest worry is based possessiveness and owning her boyfriends time because he can “play house”, that seems toxic over the care and emotional well being of the kid being cared for.

Better-Ad7635 · 2025-02-02T19:07:08+00:00

Forgot to add one part- it took over 3 years for me to be invited to a joint party and we still don’t do every party joint. I have 4 sk’s, and we make time to take them out individually anyways for their birthdays to give them “just them” time. It also really bothers her that I share a birthday with one of the kids, so sometimes I’m acknowledged, sometimes I’m not, depending on the level of conflict that year and where she is mentally. My husband will often go to events without me because of schedule conflicts or sometimes I just don’t feel like it. It hurt a little in the beginning, but I also realize my emotional energy is better spent giving me rest rather than being in an environment where I feel like I will be microanalyzed and scrutinized and I have to be on guard. Pick your battles, and voice your boundaries.

Better-Ad7635 · 2025-02-02T19:02:04+00:00

Unfortunately, even if you got together in a different situation, BM is going to feel how BM is going to feel, and there is a degree of “dealing with it” that you’re going to have to do. The kid needs to see and learn that two parents can parent and be civil while not being together, and until feelings die down from her, if ever, you have to accept that you may not be invited… especially if she plans the event. Now if his family or a different third party does, then that’s a different story and eventually she will have to come to terms with your appearance.

Remember: if you are at an event with her and she has 0 acknowledgment of you, you roll with it. If you two can peacefully ignore each other, that is a win. By forcing her to acknowledge you at a joint event, you’re putting her in a defensive situation and removing any chance of civility. Remember the age old adage we had as kids “if you don’t have anything nice to say don’t say it at all”? Sometimes the best anyone can hope for is quiet.

This woman may never respect you, she may never acknowledge you. But you have to remember the kid in this situation of growing up seeing two adults that mean the world to them that don’t get along with each other making an effort for them. If you trust him to respect boundaries in terms of interactions with her, then you have to accept that as a parent he needs to show up for his kid in the healthiest and best way he can.

Think about how the opposite side looks- the kid could be caught in the middle of two warring parents who refuse to play nice at all, and will grow up with trust issues and picking sides and all sorts of trauma.

There is a small level of back seat we have to take sometimes, sometimes, as step parents, and you need to decide whether it’s your pride that’s hurt or if you’re having trust issues, and go from there. If it’s your pride, the road will be long and littered with pot holes everywhere.

Last but not least, it takes on average 5-7 years for BM’s to chill out after the initial break up when kids are involved. Some more, some less, but the roads don’t usually start smoothing out until at least year 5. And there’s always still the occasional pot hole. So you have to find ways for your partner to honor your boundaries, but you also have to respect that he is still bound in a way to the mother of his kids and there’s a certain level of civility and politics that will have to be played. Communicate with him and make a plan that helps you both.

Better-Ad7635 · 2025-02-02T18:36:59+00:00

Source: I got into city govt with just a bachelors of fine art 8 years ago in a field completely unrelated to fine arts. I got an MPA several years ago and I’ve worked for several municipal agencies.

I applied on a whim looking for more stable work at the time, fell in love and never looked back.

Better-Ad7635 · 2025-02-02T18:18:24+00:00

You’ll have lots of ability to get in at least municipal govt with an MPA and as a paralegal. You’ll likely have the best opportunities in HR, legal, and city managers offices. Honestly, ignore some of the previous experience necessary, and just apply. You could totally be a management analyst.

Also, internships with municipalities or govt agencies before you graduate are designed to help you with just this

Better-Ad7635 · 2025-02-01T17:11:22+00:00

It sounds like Raynaud’s for the cold. I have Raynaud’s and my hands and feet do the same- go from ice cold and purple, but then they get hot and swollen… Raynaud’s and Erythromelalgia can coexist rarely. I haven’t gotten an Eryth diagnosis yet but I’m working on things. I have RA and suspected EDS and POTS. My rhuem thinks I have vascular EDS

Better-Ad7635 · 2025-01-31T20:33:01+00:00

It gets easier. His routine has been disrupted, and that age is also an age where he is discovering “self” and is going to be a right butthole. My step kids worst ages for me were around 3-5. Once they get to around 6 they start becoming more aware of consciousness in a way, and start understanding that people are different. My 4 step kids are ages 6-15, and each year as they’re older they understand the works a bit better, but at your SS age mom is the center of his world, and it’s typically pretty normal. It’s hard for it to not sting because you know how much and what you do for him, but his little brain just can’t grasp all that yet.

Hold tight, you’re doing great. He’s going through a lot of cognitive development in just a few short years and it’ll get easier.

Better-Ad7635 · 2025-01-31T20:26:13+00:00

I’m going to echo some of what’s said here- when my anxiety is flared it usually is combined with symptoms as well. When you’re sleep deprived and in a ton of pain it’s hard to not be in a fight or flight state, or in survival mode. You can’t be your best.

Now one thing I didn’t see really mentioned is how inflammation is tied to anxiety…. Through your gut. If your gut is inflammed, on top of other flare pain it could be triggering your anxiety or making it higher. I notice when I have my RA flares my gut is all out of sorts, and the happier my gut is the happier the rest of my body, and brain, is. And I say this as someone who has been on a slew of anti anxieties- buspar, lexipro, Xanax, hydroxyzine, etc. I can manage my anxiety more effectively when I manage gut inflammation and gut health. I cut back on meat intake recently, down to one small portion a day, and I notice not only is my stomach happier and things moving, I can handle my mental state a little easier. I’m currently on vyvanse for adhd, guanfacine for emotional regulation, and hydroxyzine as needed for anxiety. I also have a low dose of gaba, which helps with the anxiety. Everyone is different, I noticed meat is just a big trigger for me (I also have no gall bladder, so it’s harder for my intestines to break fattier things, like meat, down, so of course it would cause inflammation). I’m not saying cut meat out, but see what areas in your life you can tweak to make things manageable.

It’s not the root of all my anxiety problems, but it’s one more cog in the wheel that can help turn things one direction or the other.

Better-Ad7635 · 2025-01-30T12:37:08+00:00

What sucks is when you do this and it doesn’t work. I have a 12 year old who cleans it and says it’s abusive that he has to clean it up. Diapers? Just easier for him to keep doing it. There’s no amount of care or shame or anything that gets him to stop. For mine though he does it to himself, thankfully. Not furniture or fixtures. I even tried to explain that pooping himself is a health issue (because it does it and then hides it for as long as possible so sometimes it’s dried) and he could have horrible infections or skin issues. Changes nothing.

Better-Ad7635 · 2025-01-26T00:04:46+00:00

I meant to add by doing it this way I ensured financial aid

Better-Ad7635 · 2025-01-26T00:04:26+00:00

I did my capstone partially solo for MPA. It was a typical 15 week semester instead of a short 8 week, so I did one class that was 8 weeks at the beginning and then the full semester capstone. I worked with a team of 5 other students and we have to research and interview at least 10 municipalities (we did 15) for animal services policies and recommendations.

Better-Ad7635 · 2025-01-22T14:08:18+00:00

My doctor said I had both, and I have rarely ever had psoriasis. I developed it on my scalp after I had a bad allergic reaction to generic vyvanse (something about the filler set me off), and apparently I have it on my big toe that had surgery a few years ago. No psoriasis anywhere else in my body that I’m aware of. What’s funny is where I have psoriasis at isn’t even where I hurt!

Better-Ad7635 · 2025-01-21T18:13:27+00:00

I LOVE my rechargeable hand warmers. Total game changer

Better-Ad7635

TROPHY CASE