The greatest wealth is health - Emily's journey
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The greatest wealth is health but, for some, the health journey doesn't come cheap!
Emily Wheldon is a beautiful and kind 24 year old - Mother to Ava-Rose and partner to Jason. Emily has a heart of gold and always has a smile on her face, despite the health nightmare she has faced from a young age.
Emily has recently had some major and devastating news to add to her already very complex medical issues. This means that Emily will now be spending the rest of her life having medical procedures and being carefully monitored in and out of different hospitals all around the UK (for reasons I'll explain in more detail below if you don't yet know). Emily also has the added worry that her daughter, Ava, has 50:50 chance of having this rare and complex medical issue.
Not only does Emily now have the worry of her serious health issues, but she also has the massive burden and strain of covering the costs of petrol/travel and accommodation for these ongoing medical appointments around the UK. This doesn't come cheap - The NHS is amazing, but obviously it can't cover these inevitable spiralling travel costs.
I have set up 'The greatest wealth is health fund - Emily's journey' to try and ease some of the financial burden Emily faces on her physical journey to different hospitals around the UK. Wouldn't it be amazing to take just a little bit of burden off Emily's shoulders? We know times are tough and money is tight right now, but even if everyone we know could donate just a few pounds then it would make a massive impact on easing Emily's financial worries!
Emily's medical journey is long and complex - It exhausts me just to write it down. Imaging living it???!!! This is Emily's reality and it isn't going to go away - she'll unfortunately be living this journey for the rest of her life. I'll attempt to explain:
As a toddler, Emily was diagnosed with ovarian cancer (a yolk sac tumour) and had an operation to remove the cancer. This meant that Emily had one of her ovaries removed. Fortunately, the operation was successful and after undergoing rounds of gruelling chemotherapy treatment, Emily went into remission.
Fast forward approx. 15 years and Emily developed a lump in her left arm. This was later diagnosed as an AVM (Arteriovenous Malformation). This is when a group of blood vessels in the body form incorrectly. In these malformations, arteries and veins are unusually tangled. The AVM has grown significantly, causing major pain and disability to Emily. It also means that the added strain to Emily's heart is causing heart failure. Emily has already undergone embolization and sclerotherapy surgery 5 times, in London, to try to ease the effects of the AVM. This treatment is ongoing and complex.
Emily has more recently had a few other issues; including her breasts and has had surgery to remove some milk ducts. It's fair to say, Emily has given medical professionals some rare and complex challenges and I think someone finally stood back and said "why the hell is this poor lady having all of these rare and complex medical issues? Could it be to do with her DNA and genetics???"
Emily was referred for genetic testing and, after waiting 3 months for the results, on Friday 26th February received some life changing news.
Emily has had a mutation to her PTEN gene.
This means she has all the risks associated with the following two syndromes:
*Cowden syndrome
* Bannayan-Riley-Ruvalcaba Syndrome
They now have to screen for all the problems that these syndromes can cause because Emily is at extremely high risk of developing different cancers and further AVM's.
This lifelong and complex screening will include:
~ Further AVM screening - 50% of people with the PTEN mutation who have one AVM develop more AVM's. Emily is currently experiencing some bleeding, which they need to check to ensure this isn't due to a further AVM in the bladder region.
~Up to 80% of people with the PTEN gene mutation will get breast cancer. Emily is already being monitored closely in this area due to previous issues and milk ducts being removed so she would have regular MRI's. They have however advised Emily to seriously consider having surgery to remove her breast tissue and Emily has been referred to surgeons to discuss this.
~Thyroid glands - It is not uncommon to have over active or under active thyroids. Also, Cowden syndrome means a high chance of getting thyroid cancer. Emily will now have very regular checks on thyroid.
- High chance of developing Cancer in womb - Screening isn’t very easy so there isn’t a screening programme. Emily has been advised to think about having an hysterectomy. If Emily decides against that at this time, they will inevitably refer Emily to a gynaecologist when she reaches 35-40 years old, to discuss surgery anyway.
Kidneys - 1 in 3 people with the PTEN mutation will develop kidney cancer. Emily will have yearly kidney scans from the age of 40.
Bowel - High chance of developing bowel cancer - Emily will need a colonoscopy at the age of 35 & 55.
Skin cancer - the chances of Emily developing skin cancer isn’t high but the risk is there. Emily is therefore being referred to a dermatologist and needs to be extra careful in sun.
Other things Emily needs to be mindful of -
This PTEN mutation can occasionally cause a rare tumour in the back of the brain which effects balance and causes headaches.
Taking all of the above into account and coupling it with the fact that Ava (and other family members) now have to be tested to see if they face the same lifelong challenges, wouldn't it be amazing to give Emily some good news by raising a little money for her to take the financial pressure off??!!
We really would appreciate anything you can contribute
XoxoX
Emily Wheldon is a beautiful and kind 24 year old - Mother to Ava-Rose and partner to Jason. Emily has a heart of gold and always has a smile on her face, despite the health nightmare she has faced from a young age.
Emily has recently had some major and devastating news to add to her already very complex medical issues. This means that Emily will now be spending the rest of her life having medical procedures and being carefully monitored in and out of different hospitals all around the UK (for reasons I'll explain in more detail below if you don't yet know). Emily also has the added worry that her daughter, Ava, has 50:50 chance of having this rare and complex medical issue.
Not only does Emily now have the worry of her serious health issues, but she also has the massive burden and strain of covering the costs of petrol/travel and accommodation for these ongoing medical appointments around the UK. This doesn't come cheap - The NHS is amazing, but obviously it can't cover these inevitable spiralling travel costs.
I have set up 'The greatest wealth is health fund - Emily's journey' to try and ease some of the financial burden Emily faces on her physical journey to different hospitals around the UK. Wouldn't it be amazing to take just a little bit of burden off Emily's shoulders? We know times are tough and money is tight right now, but even if everyone we know could donate just a few pounds then it would make a massive impact on easing Emily's financial worries!
Emily's medical journey is long and complex - It exhausts me just to write it down. Imaging living it???!!! This is Emily's reality and it isn't going to go away - she'll unfortunately be living this journey for the rest of her life. I'll attempt to explain:
As a toddler, Emily was diagnosed with ovarian cancer (a yolk sac tumour) and had an operation to remove the cancer. This meant that Emily had one of her ovaries removed. Fortunately, the operation was successful and after undergoing rounds of gruelling chemotherapy treatment, Emily went into remission.
Fast forward approx. 15 years and Emily developed a lump in her left arm. This was later diagnosed as an AVM (Arteriovenous Malformation). This is when a group of blood vessels in the body form incorrectly. In these malformations, arteries and veins are unusually tangled. The AVM has grown significantly, causing major pain and disability to Emily. It also means that the added strain to Emily's heart is causing heart failure. Emily has already undergone embolization and sclerotherapy surgery 5 times, in London, to try to ease the effects of the AVM. This treatment is ongoing and complex.
Emily has more recently had a few other issues; including her breasts and has had surgery to remove some milk ducts. It's fair to say, Emily has given medical professionals some rare and complex challenges and I think someone finally stood back and said "why the hell is this poor lady having all of these rare and complex medical issues? Could it be to do with her DNA and genetics???"
Emily was referred for genetic testing and, after waiting 3 months for the results, on Friday 26th February received some life changing news.
Emily has had a mutation to her PTEN gene.
This means she has all the risks associated with the following two syndromes:
*Cowden syndrome
* Bannayan-Riley-Ruvalcaba Syndrome
They now have to screen for all the problems that these syndromes can cause because Emily is at extremely high risk of developing different cancers and further AVM's.
This lifelong and complex screening will include:
~ Further AVM screening - 50% of people with the PTEN mutation who have one AVM develop more AVM's. Emily is currently experiencing some bleeding, which they need to check to ensure this isn't due to a further AVM in the bladder region.
~Up to 80% of people with the PTEN gene mutation will get breast cancer. Emily is already being monitored closely in this area due to previous issues and milk ducts being removed so she would have regular MRI's. They have however advised Emily to seriously consider having surgery to remove her breast tissue and Emily has been referred to surgeons to discuss this.
~Thyroid glands - It is not uncommon to have over active or under active thyroids. Also, Cowden syndrome means a high chance of getting thyroid cancer. Emily will now have very regular checks on thyroid.
- High chance of developing Cancer in womb - Screening isn’t very easy so there isn’t a screening programme. Emily has been advised to think about having an hysterectomy. If Emily decides against that at this time, they will inevitably refer Emily to a gynaecologist when she reaches 35-40 years old, to discuss surgery anyway.
Kidneys - 1 in 3 people with the PTEN mutation will develop kidney cancer. Emily will have yearly kidney scans from the age of 40.
Bowel - High chance of developing bowel cancer - Emily will need a colonoscopy at the age of 35 & 55.
Skin cancer - the chances of Emily developing skin cancer isn’t high but the risk is there. Emily is therefore being referred to a dermatologist and needs to be extra careful in sun.
Other things Emily needs to be mindful of -
This PTEN mutation can occasionally cause a rare tumour in the back of the brain which effects balance and causes headaches.
Taking all of the above into account and coupling it with the fact that Ava (and other family members) now have to be tested to see if they face the same lifelong challenges, wouldn't it be amazing to give Emily some good news by raising a little money for her to take the financial pressure off??!!
We really would appreciate anything you can contribute
XoxoX
Organizer and beneficiary
Jennifer Edwards
Organizer
Emma Kidger
Beneficiary
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