{"id":512701,"date":"2026-06-01T08:22:16","date_gmt":"2026-06-01T08:22:16","guid":{"rendered":"https:\/\/www.europesays.com\/ie\/512701\/"},"modified":"2026-06-01T08:22:16","modified_gmt":"2026-06-01T08:22:16","slug":"student-with-cool-party-trick-now-cant-speak-for-more-than-a-few-minutes-without-bleeding","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/ie\/512701\/","title":{"rendered":"Student with ‘cool party trick’ now can’t speak for more than a few minutes without bleeding"},"content":{"rendered":"

The 25-year-old has been banned from exercisingNeil Shaw<\/strong><\/a> Assistant Editor (Money and Lifestyle)<\/p>\n

06:45, 01 Jun 2026Updated 07:07, 01 Jun 2026<\/p>\n

\"Lavender<\/p>\n

Lavender was bullied for being ‘different’<\/p>\n

A student whose \u201ccool party tricks\u201d of dislocating her joints, contortion and stretching her skin turned out to be a rare condition now cannot speak for more than a few minutes without her mouth bleeding and is banned from exercise. Lavender Blackthorne, a 25-year-old music production student from Brighton, first noticed \u201csomething was wrong\u201d at the age of six when her joints began popping out of their sockets and she could stretch her skin up to 10cm outwards.<\/p>\n

By the age of 12, she began bruising easily, and by 14, she said her legs had become \u201ctwisted\u201d, her joints dislocated from simple movements and heart palpitations led doctors to ban her from exercising beyond walking. Doctors suspected Ehlers-Danlos syndrome (EDS) \u2013 a rare inherited condition that affects connective tissue \u2013 but delayed a formal diagnosis until adulthood.<\/p>\n

At the same time, she was diagnosed with an autoimmune condition, although doctors have not yet identified the type, which could cause her immune system to attack her own body. While in secondary school, she said she was suicidal and was severely bullied \u2013 she felt as though she could no longer achieve her dream of having a relationship, family and competing in gymnastics in the Olympics due to her condition.<\/p>\n

\"Lavender's<\/p>\n

Lavender’s skin began bruising easily from age 12<\/p>\n

At 19, she enrolled at university to study metalwork but was forced to drop out as even picking up a hammer caused her wrist to dislocate. She was officially diagnosed with EDS at 21 and now also lives with extreme fatigue, swelling, skin rashes and mouth bleeding after speaking.<\/p>\n

Lavender told PA Real Life: \u201cI did become quite suicidal at a few points, just because sometimes I\u2019d be bedbound for a week or so, and then it felt like all my dreams of having a relationship and a family in the future were falling apart. I thought I\u2019d never be able to have those things, and I didn\u2019t think I\u2019d be able to go to university, and I had no idea what job I could do.<\/p>\n

\u201cI used to get bullied quite a lot for being different \u2013 I was the person in the corner just not feeling very well and I was really quiet.\u201d<\/p>\n

\"Lavender's<\/p>\n

Lavender’s joints began popping out of their sockets at age six<\/p>\n

As a child, Lavender was \u201creally good at running really fast\u201d, until one day, at the age of six, she fell and her ankle popped out of its socket. As she got older, she said she could pinch her skin and pull it up to 10cm outwards across her body. I noticed that I could do some really cool party tricks, like extreme flexibility, moving my body in really weird ways, (my joints) coming out of their sockets and pulling my skin,\u201d she said.<\/p>\n

\u201cWhen I used to play with friends when I was young, and we\u2019d grab each other, they could just grab a handful of my skin and just hold it like a puppy\u2019s skin.\u201d<\/p>\n

By the age of 12, her skin bruised very easily and she was diagnosed with severe anaemia \u2013 a lack of red blood cells. As she started secondary school, her joints would \u201cpop out\u201d of their sockets after small movements or moving \u201ctoo quickly\u201d.<\/p>\n

She said: \u201cIf I twisted my hips or raised my arms, the skin around it would tear. At the time, I wanted to be in the Olympics, doing some kind of gymnastics, and I got into contortion.<\/p>\n

\"Lavender<\/p>\n

Lavender is banned from exercising<\/p>\n

\u201cBut all the injuries just wore my body down \u2013 the tears were getting more common and my energy levels were completely defeated.\u201d<\/p>\n

At the age of 14, her legs became \u201ctwisted\u201d \u2013 when she was lying straight, they would \u201cbow out and back in again\u201d. After several tests, she received an informal diagnosis of EDS, but her doctor said the condition is typically diagnosed formally at an older age, as some people can \u201cgrow out\u201d of the symptoms.<\/p>\n

After further tests at 14, she was diagnosed with moderate mitral regurgitation, a condition where a valve in the heart does not work properly. She said doctors told her she could no longer exercise beyond walking. The condition was also linked to her suspected EDS, which can make connective tissue structurally weak.<\/p>\n

\u201cIt made me feel really sad and like I had no control over my body,\u201d Lavender explained. \u201cIt was terrifying. I thought I was going to die after being diagnosed with a heart condition.\u201d Around the same time, she visited a rheumatologist and was told she had an autoimmune condition, meaning her immune system was attacking her body\u2019s own tissues.<\/p>\n

\"Lavender<\/p>\n

Lavender initially thought dislocating her limbs was a ‘cool party trick’<\/p>\n

She said the condition \u201clies dormant\u201d and can \u201cactivate at any time\u201d. Lavender said her diagnoses and day-to-day health struggles affected her mental health, making her feel suicidal. Her symptoms continued as she got older.<\/p>\n

She was officially diagnosed with EDS at the age of 21 but her doctors remain unsure which type she has. According to the NHS, Ehlers-Danlos syndromes (EDS) are a group of 13 inherited conditions that affect connective tissue, most of which are rare.<\/p>\n

There is no specific treatment but it is possible to manage many of the symptoms with support and advice, and Lavender has been prescribed strong painkillers to help her day-to-day pain. \u201cIt felt like a relief but I still just feel awful every day,\u201d Lavender said.<\/p>\n

Since then, she has experienced a flare-up in symptoms linked to her autoimmune condition. She said she suffers from extreme fatigue, swelling, skin rashes and mouth bleeding after talking for just a few minutes.<\/p>\n

Lavender is now fundraising for private tests, as she believes she may have additional autoimmune conditions. She also struggles with breathing and hopes to identify the cause to receive appropriate treatment.<\/p>\n

\"Lavender<\/p>\n

Lavender said her mouth bleeds after talking for just a few minutes<\/p>\n

She said she often feels \u201cquite depressed and nervous\u201d because she does not know how her body will be on any given day. She said: \u201cI live alone but I like it because when I\u2019m in a lot of pain, I\u2019m able to go through it alone.<\/p>\n

\u201cI\u2019m quite embarrassed to be so ill and I like to hide it, but I\u2019m trying to be more open and share my story with others so they know they\u2019re not the only ones.\u201d<\/p>\n

She returned to university to study music production at WaterBear Brighton in 2023, aged 22, and said her mental health has improved as a result. Lavender said: \u201cI feel a lot better in myself now. I want others to know it gets better too!\u201d<\/p>\n

To donate to her fundraiser, visit: www.gofundme.com\/f\/private-healthcare-after-nearly-half-a-decade-on-waitlist<\/a>.<\/p>\n

For support, Samaritans can be contacted for free, day or night, 365 days a year, on 116 123, or visit samaritans.org<\/a> to find your nearest branch.<\/p>\n","protected":false},"excerpt":{"rendered":"The 25-year-old has been banned from exercisingNeil Shaw Assistant Editor (Money and Lifestyle) 06:45, 01 Jun 2026Updated 07:07,…\n","protected":false},"author":2,"featured_media":512702,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[278],"tags":[28032,2597,18,525,74223,135,19,1666,17,112946,167,1565,28031],"class_list":["post-512701","post","type-post","status-publish","format-standard","has-post-thumbnail","category-fitness","tag-bullying","tag-education","tag-eire","tag-fitness","tag-gymnastics","tag-health","tag-ie","tag-immune-system","tag-ireland","tag-london-2012-olympics","tag-mental-health","tag-nhs","tag-secondary-school"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ie\/116673889283270488","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/512701","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=512701"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/512701\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/512702"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=512701"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=512701"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=512701"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}