u/redfoxxy23

Hi Ya’ll!

I saw some confusion about VEDS in another community so wanted to ensure there was some clarity here!

VEDS is an Autosomal Dominant disorder, meaning that it only takes 1 “pathogenic” or “likely pathogenic” variant on the COL3A1 gene to cause disease. Because of this, folks can not be “carriers” of VEDS like in some other genetic conditions that are recessive. For example, conditions like Cystic Fibrosis (recessive) require that 2 variants are present to cause disease vs the one needed in VEDS. This can mean that for someone with CF or a similar disorder that each parent may have been a “carrier” for that disease but that the parent does not have the disease itself.

For VEDS, someone can come to have VEDS in two ways: a positive VEDS parent has about a 50% chance of offspring having VEDS or a child can have a “de novo” variant, meaning it developed spontaneously without being passed from a VEDS parent.

If someone comes back as “pathogenic” or “likely pathogenic” on a legitimate dr ordered COL3A1 genetic test (not a home or personal test kit), that typically meets the critera for them to be diagnosed with VEDS. They do not have to have had events in the past to be diagnosed if they have “positive” test result, although that is likely if they were tested. I saw confusion on another post about someone being positive for VEDS but not having had an event be described as a “carrier” so want to help explain! There are no silent “carriers” of VEDS- VEDS as a condition is extremely varied and there are some who live with few events, some with less severe symptoms or almost no symptoms, and others who have many many VEDS complications.

Went to pelvic pt today and was so validated and feel like i have answers!

Ive always felt like ive had weak pelvic floor issues (both sexually and with constipation/fecal incontence) but drs always dismissed me because I’m in my 20s with no kids. Especially for the sexual disfunction- every dr told me I have some sort of mental block and no one ever even suggested pelvic pt. A Gastro recommended that pelvic pt could be really helpful for my bowel issues and I went today and was told I do infact have a very very weak pelvic floor. I finally feel like I can actually make a difference in that quality of my life.

Would highly recommend to anyone also dealing with these issues to get evaluated. Some people have too tight muscles and some ppl too weak (with eds i think we are mostly on the weak side but its important to have a pt check). Especially if you are young like me and havent been taken seriously or properly evaluated.

Hi ya’ll - planning a super last min flight to Tokyo/Osaka/Kyoto.

Seeing all sorts of mixed things online about the typhoon and how hot it is etc. it seems like people are focused on heat but im def more concerned with rain. Im currently in florida and from the weather app it seems like humidity and heat are comparable (loving the florida heat) but trying to get a sense of if the downpours are short and temporary like florida too or if the weather app is correct and its downpours all day.

If its similar to Florida in July seems like my ideal weather. If its full on rainy all day/sad clouds/no outdoor activities because of rain, its prob not for me. Anyone have a sense??

Hi friends! I have constant joint clicking/popping throughout the day each time I move or change positions. Probably hundreds of pops/clicks a day. Its not dislocations and they do not hurt but sounds just as if i was cracking my knuckles. Happens in all my joints it seems like. Ive talked to my dr and they arent concerned with it but just curious if anyone else has the constant popping?

Hi ya’ll looking into safari tours in a few different african countries. I am 26f.

Currently wondering about Contiki, G adventures, the company that initials start with EF tours and intrepid. Anyone have any experience with any of these groups? Anyone done an Africa trip with them?

The tours are about 2-7k without flights which is a good range for what im looking for. but looking for a good time and Want to get a lot of wildlife viewing in.

Also open to any new recs!

Edit: i am a solo female but im open to coed tours i do not want women only

Hi ya’ll looking into safari tours in a few different african countries. I am 26f.

Currently wondering about Contiki, G adventures, the company that initials start with E and ends with F (appears to be fully blocked from naming in this sub..?) tours and intrepid. Anyone have any experience with these groups? Anyone done an Africa trip with them?

Im def on a budget and these are on the range im willing to spend but looking for a good time and Want to get a lot of wildlife viewing in.

Also open to any new recs!

Budget: ~2-7k usd on the tour

Hi ya’ll looking into safari tours in a few different african countries.

Currently wondering about Contiki, G adventures, the company that initials start with E and ends with F (appears to be fully blocked from naming in this sub..?) tours and intrepid. Anyone have any experience with these groups? Anyone done an Africa trip with them?

Im def on a budget and these are on the range im willing to spend but looking for a good time and Want to get a lot of wildlife viewing in.

Also open to any new recs!

Hey ya’ll - I (26F) and considering egg freezing because I have an Autosomal Dominant disease (meaning I have the disease and one copy causes disease and I have a 50% chance of passing the disease to my offspring). Disease shouldnt affect my fertility.

I came back with a 3.6 AMH but a follicle count of 13 which is apparently low for my age. Anyone know what this means?

Since 50% of the embryos later will have the disease (apparently it is normally more than 50% because the autosomal dominant eggs tend to be strongest/chromosomally normal or something) trying to figure out the potential impact of this.

Thank u!

Hi friends, today is REDS4VEDS day where the VEDS community spreads awareness about our rare, life threatening genetic disorder. Would love to have fellow chronic illness friends join in or learn more.

What is VEDS?

VEDS (Vascular Ehlers-Danlos Syndrome) is a severe, rare genetic disorder that weakens the body's connective tissues. Caused by mutations in the COL3A1 gene, it prevents the body from producing normal type 3 collagen. Its similiar but less prevelant to Marfan’s syndrome.

Symptoms of Vascular Ehlers-Danlos syndrome that may not be apparent from outward appearance include aneurysms, artery dissections, and arterial tears (including the aorta), as well as sudden lung collapse, bowel perforations, and uterine rupture during pregnancy. Additional symptoms can include easy bruising, characteristic facial features and other less severe unexplained symptoms like chronic pain. It is diagnosed via genetic testing on the COL3A1 gene.

The format for REDS4VEDS is free and simple to get involved with:

• ⁠Wear something red
• ⁠Take a picture
• ⁠Share on your socials using the hashtag #REDS4VEDS

You can wear as much or as little red as you want just so long as it’s red! The key to the success of the campaign is the hashtag #REDS4VEDS which helps pull the campaign together!

if you have experienced any of the above and it’s unexplained by your current diagnosis but have not been able to access further care, there are resources available that we can connect you with!

Hi friends, today is REDS4VEDS day where the VEDS community spreads awareness about our rare, life threatening genetic disorder! Would love to have fellow rare disease friends join in or learn more!

What is VEDS?

VEDS (Vascular Ehlers-Danlos Syndrome) is a severe, rare genetic disorder that weakens the body's connective tissues. Caused by mutations in the COL3A1 gene, it prevents the body from producing normal type 3 collagen. Its similiar but less prevelant to Marfan’s syndrome.

Symptoms of Vascular Ehlers-Danlos syndrome that may not be apparent from outward appearance include aneurysms, artery dissections, and arterial tears (including the aorta), as well as sudden lung collapse, bowel perforations, and uterine rupture during pregnancy. Additional symptoms can include easy bruising, characteristic facial features and other less severe unexplained symptoms. It is diagnosed via genetic testing on the COL3A1 gene.

The format for REDS4VEDS is free and simple to get involved with:

• ⁠Wear something red
• ⁠Take a picture
• ⁠Share on your socials using the hashtag #REDS4VEDS

You can wear as much or as little red as you want just so long as it’s red! The key to the success of the campaign is the hashtag #REDS4VEDS which helps pull the campaign together!

if you have experienced any of the above and it’s unexplained by your current diagnosis but have not been able to access further care, there are resources available that we can connect you with!

REDS4VEDS Day is a global campaign that takes place on the third Friday of May each year to help raise awareness of vascular Ehlers-Danlos Syndrome (vascular EDS), a rare genetic disorder.

REDS4VEDS was launched in May 2015 and is hosted by Annabelle's Challenge. The campaign continues to gain momentum year on year helping to raise awareness for those who are touched by vascular EDS, it is also a great way to raise vital funds for research.

The format for REDS4VEDS is free and simple to get involved with:

• ⁠Wear something red
• ⁠Take a picture
• ⁠Share on your socials using the hashtag #REDS4VEDS

Participants are encouraged to engage through places of work, school, and colleges. You can wear as much or as little red as you want just so long as it’s red! The key to the success of the campaign is the hashtag #REDS4VEDS which helps pull the campaign together.

The stick is being shoved down my throat on tik tok but its not on amazon or their site?? But it does seem like their official tik tok posted it.. anyone know why?

And anyone actually tried it? If it helps my under eyes im interested but im sussed by it not being on their site