"I bruise so badly teachers thought I was being abused as a child - but it was rare condition"
- 4 months ago
A woman who bruises so badly teachers thought she was being abused as a child has been diagnosed with a rare condition - which will slowly "turn her to stone".
Lina Ahnberg, 21, was diagnosed with Ehlers-Danlos Syndrome (EDS) - a group of conditions that cause very flexible joints and stretchy and fragile skin - in October 2021.
Lina said that she is often unable to move due to being physically exhausted and constant chronic pain.
She claims her symptoms including bruising, baby-like skin and chronic pain were "dismissed" by health professionals since she was a child - and she was told they were down to stress.
From a young age Lina would get bruising all over her body and experienced chronic joint pain - which was so severe during childhood, her teachers asked if everything was OK at home, wrongly thinking she was being abused.
The most simple of tasks - like having a conversation or having a shower - tire Lina out so much that she will need to have a lie down.
Lina, a student, from Uppsala, near Stockholm, Sweden, said: "During my whole life my symptoms got brushed off as something that would go away with time but instead it got worse and worse.
"I can't remember a time where I haven't experienced pain - I have experienced a lot of back pain which is unusual for someone my age.
"I experienced a lot of stomach cramps and nausea. I have soft baby-like skin, soft hair, stretch marks and thin skin.
"I was relieved to finally have a diagnosis - even though there is no cure.
"I found that a lot of doctors didn't know what EDS is and that if you present a list of symptoms they can be part of a bigger problem."
Since she was in nursery Lina has presented EDS symptoms - including bruising and severe joint pain.
She said: "From an early age I had bruises on my body to the point that my kindergarten teacher would ask my parents if everything was OK at home.
"I can't remember a time when I haven't experienced chronic pain.
"My stomach issues - pain and constipation - caused me to develop an eating disorder at eight years old and I then was diagnosed with anorexia which nearly took my life.
"All this started with stomach cramps and nausea which was caused by EDS.
"Even tough I am healthy now and recovered from my eating disorder I am still dealing with the stomach issues."
Lina's symptoms worsened through her teenage years when she started developing other conditions caused by EDS such as inappropriate sinus tachycardia - a sinus heart rate inexplicably higher than one hundred beats per minute at rest.
Lina said: "I think it's important for people to realise that EDS is way more than just being bendy and having stretchy skin.
"EDS comes with a lot of comorbidities. Mine have impacted my life just as much as EDS itself.
"There are so many misconceptions about EDS out there."
Lina said that the simplest of tasks like showering or having a conversation can leave her exhausted and needing to take a break.
In October 2023, Lina went to see a doctor at the Ultuna Health Centre in Uppsala, Sweden, with her medical folder containing her health history and EDS symptoms she had experienced.
Lina said: "I had called into this doctor's office to say how I wanted to get a diagnosis for EDS.
"I knew this doctor was willing to listen to people with these symptoms.
"He evaluated my hyper-mobility and went through all the different criteria for EDS.
"I was so relieved - I remember crying for days, not with sadness but I was relieved that after 21 years someone finally came and said it was real.
"Of course, it is a hard truth to swallow, especially when you think about my anorexia, I was told I would never recover.
"I had been severely ill, after five years with severe anorexia doctors told me I would never recover as they saw me as a hopeless case that was far too gone.
"The hardest part of EDS isn't the illness it is all the different hospital appointments I have to have. I plan my weeks around my appointments.
"Although there are treatments that focus on managing the symptoms - there is no cure."
Lina Ahnberg, 21, was diagnosed with Ehlers-Danlos Syndrome (EDS) - a group of conditions that cause very flexible joints and stretchy and fragile skin - in October 2021.
Lina said that she is often unable to move due to being physically exhausted and constant chronic pain.
She claims her symptoms including bruising, baby-like skin and chronic pain were "dismissed" by health professionals since she was a child - and she was told they were down to stress.
From a young age Lina would get bruising all over her body and experienced chronic joint pain - which was so severe during childhood, her teachers asked if everything was OK at home, wrongly thinking she was being abused.
The most simple of tasks - like having a conversation or having a shower - tire Lina out so much that she will need to have a lie down.
Lina, a student, from Uppsala, near Stockholm, Sweden, said: "During my whole life my symptoms got brushed off as something that would go away with time but instead it got worse and worse.
"I can't remember a time where I haven't experienced pain - I have experienced a lot of back pain which is unusual for someone my age.
"I experienced a lot of stomach cramps and nausea. I have soft baby-like skin, soft hair, stretch marks and thin skin.
"I was relieved to finally have a diagnosis - even though there is no cure.
"I found that a lot of doctors didn't know what EDS is and that if you present a list of symptoms they can be part of a bigger problem."
Since she was in nursery Lina has presented EDS symptoms - including bruising and severe joint pain.
She said: "From an early age I had bruises on my body to the point that my kindergarten teacher would ask my parents if everything was OK at home.
"I can't remember a time when I haven't experienced chronic pain.
"My stomach issues - pain and constipation - caused me to develop an eating disorder at eight years old and I then was diagnosed with anorexia which nearly took my life.
"All this started with stomach cramps and nausea which was caused by EDS.
"Even tough I am healthy now and recovered from my eating disorder I am still dealing with the stomach issues."
Lina's symptoms worsened through her teenage years when she started developing other conditions caused by EDS such as inappropriate sinus tachycardia - a sinus heart rate inexplicably higher than one hundred beats per minute at rest.
Lina said: "I think it's important for people to realise that EDS is way more than just being bendy and having stretchy skin.
"EDS comes with a lot of comorbidities. Mine have impacted my life just as much as EDS itself.
"There are so many misconceptions about EDS out there."
Lina said that the simplest of tasks like showering or having a conversation can leave her exhausted and needing to take a break.
In October 2023, Lina went to see a doctor at the Ultuna Health Centre in Uppsala, Sweden, with her medical folder containing her health history and EDS symptoms she had experienced.
Lina said: "I had called into this doctor's office to say how I wanted to get a diagnosis for EDS.
"I knew this doctor was willing to listen to people with these symptoms.
"He evaluated my hyper-mobility and went through all the different criteria for EDS.
"I was so relieved - I remember crying for days, not with sadness but I was relieved that after 21 years someone finally came and said it was real.
"Of course, it is a hard truth to swallow, especially when you think about my anorexia, I was told I would never recover.
"I had been severely ill, after five years with severe anorexia doctors told me I would never recover as they saw me as a hopeless case that was far too gone.
"The hardest part of EDS isn't the illness it is all the different hospital appointments I have to have. I plan my weeks around my appointments.
"Although there are treatments that focus on managing the symptoms - there is no cure."