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Teenager reveals how rare a condition causes her joints to dislocate 80 TIMES a day



A teenager has revealed the heartache of suffering from a rare disease that causes her joints to dislocate up to 80 times a day.

Lauren Blake, 19, from Southampton, has Ehlers-Danlos syndrome, a connective tissue disorder that

Diagnosed with the condition in November 2016, it leaves the Girl Guide Unit Leader in constant agony as her joints dislocate when showering, brushing her teeth and even while sitting in her wheelchair.

Lauren also sufferers from gastroparesis, which causes nerves in the stomach to stop working properly, and has a tube-fed for 20 hours a day.

The conditions have dashed the teenager's hopes of becoming a primary school teacher after she had quit

 Lauren Blake (pictured), 19, from Southampton, has Ehlers-Danlos syndrome, and connective tissue disorder that affects her joints and mobility

Lauren Blake (pictured), 19, from Southampton, has Ehlers-Danlos syndrome, and connective tissue disorder that affects her joints and mobility

 Diagnosed with the condition in November 2016, it leaves the Girl Guide Unit Leader (pictured) in constant agony

Diagnosed with the condition in November 2016, it leaves the Girl Guide Unit Leader (pictured) in constant agony

Speaking of her condition, Lauren told The Sun: 'When I walk to the bathroom every morning, I 'll dislocate a knee joint or my hip will pop out while I'm brushing my teeth.

' With no cure for these conditions, coming to terms with my diagnosis was tough, especially as my friends only had GCSEs and the school prom to worry about.

She added: 'Mostly my EDS is frustrating because it's forced me to miss out on so much. It was upsetting as I watched [my friends] go to college while I had to stay at home.

'I can't go out for a meal or drinks and dancing with my friends, so it's difficult to meet people and I' m currently single. Holding down a job is difficult as well. '

 Lauren (pictured) also suffers from gastroparesis, which causes nerves in the stomach to stop working properly, and has a tube-fed for 20 hours a day

Lauren (pictured) also suffers from gastroparesis, which causes nerves in the stomach to stop working properly, and has to be a tube-fed for 20 hours a day

 Lauren enjoying some activities on a Girls Guides trip

 Despite the constant pain she feels, Lauren hopes she might one day figures out how to live and work around her EDS and try not to hold it back

 The conditions have dashed the teenager's hopes of becoming a primary school teacher for now , after she had quit an Open University course as she was in too much pain to study

The conditions have dashed the teenager's hopes of becoming a primary school teacher for now, after she had quit an Open University course as she was in too much pain to study

Lauren answered her first dislocation in June 2013 when she was just 13.

WHAT IS EHLERS-DANLOS SYNDROME?

Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

Symptoms can range from immobility to hypermobility, an increased amount of movement in joints, as well as fragile skin, frequent dislocation of joints, digestive problems and heart problems.

types of EDS are caused by faults in certain genes that make connective tissue dry.

EDS can affect people in different ways. For some the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.

Source: NHS

The teenager was practicing a long jump at her secondary school and as she landed, she heard a pop in her knee and screamed in agony.

Her leg was bent at an odd angle and she was rushed to Southampton General Hospital, where a doctor manipulated the joint back into place under local anesthetic.

At first, medics assumed Lauren had landed awkwardly, but five months later. it happened again when she was skiing.

In March 2014, the youngster was walking on a bus when her knee dislocated, before her shoulder popped out as she watched television just days later.

Doctors reassured her parents Jane, 54, a stock auditor, and Andrew, 56, a chef, that was just down to growing pains, according to Lauren.

But after researching her symptoms, which included digestive issues, she came across Ehlers-Danlos syndromes (EDS).

In November 2016 she was finally diagnosed with the condition.

Despite the constant pain she feels, Lauren hopes she might one day figure out how to live and work around her EDS.

The teenager said she would love to fulfill her dreams of being a teacher and still enjoy light activities such as volunteering with the Girl Guides.

 Lauren (pictured recently) suffered her first dislocation in June 2013 when she was just 13

Lauren (pictured recently) suffered her first dislocation in June 2013 when she was just 13

WHAT IS GASTROPARESIS?

Gastroparesis affects the normal movements of muscles in the stomach, preventing it from emptying properly.

It affects more than 1.5 million people in the US to some extent. Up to four per cent of people suffer in the UK.

Due to the condition affecting digestion, it can cause nausea and vomiting, as well as problems with people's blood-sugar levels and receiving adequate nutrition.

Other symptoms may include:

  • Feeling full after a few bites of food
  • Acid reflux
  • Abdominal bloating and pain
  • Weight loss
  • Lack of appetite

Gastroparesis can occur as a complication of diabetes, or after surgery or an infection.

Certain medications, such as antidepressants or pain relievers, can slow gastric emptying and cause similar symptoms.

Complications can include severe dehydration from vomiting, malnutrition, and reduced quality of life and undigested food hardening in the stomach, which can be life threatening.

There is no cure. Treatment focuses on dietary changes, such as eating smaller meals more often and chewing thoroughly.

Medications can help ease nausea and vomiting.

Surgery to fit a feeding tube may be required if patients are unable to tolerate any food or liquids.

Source: Mayo Clinic


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