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Erin Meegan (photo) was diagnosed with Ehlers Danlos syndrome after years of constant headache, memory and speech problems and constant pins and needles

A woman who & # 39; internal decapitation & # 39; rises every time she moves and has spent almost completely bedridden in the last three years, dreams of having a family one day.

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Erin Meegan was diagnosed with Ehlers Danlos syndrome after years of constant headache, memory and speech problems and constant pins and needles.

The 34-year-old from Perth told Daily Mail Australia that she hopes to have a family one day with her 30-year-old husband, Isaac.

Meegan said he devoted all his time and energy to keeping Erin alive and improving her quality of life.

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Erin Meegan (photo) was diagnosed with Ehlers Danlos syndrome after years of constant headache, memory and speech problems and constant pins and needles

Erin Meegan (photo) was diagnosed with Ehlers Danlos syndrome after years of constant headache, memory and speech problems and constant pins and needles

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& # 39; She spends most of her time in bed with a neck brace, & # 39; Isaac said.

& # 39; Her heart rate increases when she stands up, causing her to vomit and faint. & # 39;

Mrs. Meegan has been selected for life-saving neurosurgery in a private hospital in Barcelona, ​​Spain, by one of the few specialists in the world who is qualified to treat her.

But the treatment in itself, excluding travel, accommodation and extra scans and insurance costs at least $ 115,000.

The couple has one GoFundMe account and have raised nearly $ 18,000 from their goal to fund treatment.

The 34-year-old from Perth told Daily Mail Australia that she hopes to have a family one day with her 30-year-old husband, Isaac

The 34-year-old from Perth told Daily Mail Australia that she hopes to have a family one day with her 30-year-old husband, Isaac

The 34-year-old from Perth told Daily Mail Australia that she hopes to have a family one day with her 30-year-old husband, Isaac

Mrs. Meegan has been selected for life-saving neurosurgery in a private hospital in Barcelona, ​​Spain, by one of the few specialists in the world who is qualified to treat her
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Mrs. Meegan has been selected for life-saving neurosurgery in a private hospital in Barcelona, ​​Spain, by one of the few specialists in the world who is qualified to treat her

Mrs. Meegan has been selected for life-saving neurosurgery in a private hospital in Barcelona, ​​Spain, by one of the few specialists in the world who is qualified to treat her

WHAT IS EHLERS DANLOS SYNDROME?

EDS is a genetic connective tissue disorder that affects the biology of collagen in the body.

It can cause excessive joint mobility, often resulting in dislocations in different parts of the body.

Other symptoms include skin that is almost transparent and elastic and easily bruises.

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In extreme cases, it can rupture large blood vessels.

& # 39; I know I can lose up to 100% of my neck mobility, but it seems like an easy trade-off to lose the ridiculously long series of symptoms I have every day & # 39 ;, Meegan said.

& # 39; I don't find it that difficult. & # 39;

Meegan & # 39; s surgeon, Dr. Gilete from the Spine Institute in Barcelona, ​​has already told the couple that her treatment window is closing and she has booked for a provisional surgery date in November, but this cannot continue if they do not raise enough money .

If she does not undergo the operation as quickly as possible, Mrs. Meegan's condition will deteriorate over time, leading to the inability to speak, swallow or breathe.

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& # 39; The worst possible outcomes, if not treated, include paralysis, internal decapitation and death, & # 39; said her husband.

The couple has launched a GoFundMe account and raised nearly $ 18,000 from their goal to fund treatment

The couple has launched a GoFundMe account and raised nearly $ 18,000 from their goal to fund treatment

The couple has launched a GoFundMe account and raised nearly $ 18,000 from their goal to fund treatment

In the case of Meegan, her condition has led to excessive joint mobility around her neck (photo is a photo of her spine)

In the case of Meegan, her condition has led to excessive joint mobility around her neck (photo is a photo of her spine)

In the case of Meegan, her condition has led to excessive joint mobility around her neck (photo is a photo of her spine)

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In the case of Meegan, her condition has led to excessive joint mobility around her neck.

Every upright movement causes brain stem compression, which can lead to collapsed neck veins and reduced fluid around her brain.

She tries to document her condition as it deteriorates and said Monday was a particularly difficult day.

Further scans revealed that one of her neck veins – which & # 39; literally works like a brain drain & # 39; – had collapsed and another had partially collapsed.

& # 39; In layman terms, & # 39; read her blog post, & # 39; blood does not flow in and out of the brain as it should, so busy builds and builds and builds. & # 39;

Mrs. Meegan looks to the future and says one day that she would prefer to have children

Mrs. Meegan looks to the future and says one day that she would prefer to have children

Mrs. Meegan looks to the future and says one day that she would prefer to have children

& # 39; Yesterday's pressure in her head was unbearable. She spent a large part of the day and broke out completely. Moving was the cards, food and drink was impossible because nothing would remain. & # 39;

Mrs. Meegan looks to the future and says one day that she would prefer to have children.

& # 39; My long-term goals once I have recovered from surgery are to start a family.

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& # 39; But especially to advocate for other women struggling with rare or undiagnosed conditions so that they too can get the treatment they need, but without the long and painful journey and extravagant costs & # 39 ;.

The Craniocervical Fusion that Ms. Meegan hopes to get in November will hopefully alleviate Erin's debilitating symptoms by stabbing the vertebrae in her neck and skull to stabilize the joints so that she no longer compresses her brainstem.

It will also decompress her neck veins, allowing blood to flow freely to and from her brain.

Every upright movement causes brain stem compression, which can lead to collapsed neck veins and reduced fluid around her brain (pictured before her condition deteriorated)

Every upright movement causes brain stem compression, which can lead to collapsed neck veins and reduced fluid around her brain (pictured before her condition deteriorated)

Every upright movement causes brain stem compression, which can lead to collapsed neck veins and reduced fluid around her brain (pictured before her condition deteriorated)

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