Young Mother with skin Disease
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My sister is a young mother of three. Up until 4 years ago she had a clean bill of health until she had an adverse reaction to antibiotics . This severe reaction would send her to A&E and would become the start of her nightmare.
Once doctors tackled the initial symptoms she was discharged from
Hospital with no clarity of what was going on and hoped she would go back to normal ( like most allergic reactions) , however she would get worse as year went by with some days of relief , following days of hardships.
After a number or misdiagnosis she was eventually diagnosed with EBA ( Epidermolysis Bullosa Acquisita) chronic condition characterized by skin fragility causing blistering in response to friction, heat and trauma. This occurs because a genetic ‘spelling mistake’ means that the mechanism holding the layers of the skin together is defective, causing blisters to form, in this case mainly to the legs, feet and hands.
She went from being an active mother, wife and student to being bed bound and in severe debilitating pain EVERYDAY. She has been left to deal with her own wound care and was told by her consultant that his application for NHS funding ‘ will be declined ‘
Her life has become consumed by a progressive disease and is affecting nearly 90% of her body. Most recently her eyes have been affected and if it goes untreated can lead to long-term irreversible eye damage. After years of back and forth, the medical professionals in the UK have not been able to provide long-term effective treatment their aims have been heavily geared towards pain management.
This disease affects the biggest organ of the body- the skin. Over 90% of her body becomes covered in blisters as though her body has been burnt. The blisters later become large areas of bloody open wounds. This in turn leads to other complications such as infections.
Day to day life is very hard, simple task such as tending to her kids and husband is almost impossible. She has spent the last years living in highs and lows from being bed bound and in and out of hospitals with no end in sight.
Through research, we have found specialists who had positive outcomes with similar cases using the drug Rutuxinmab and a medical procedure called blood washing. we have initiated contact with top specialists in this field and they are willing to look into her case.
However, these doctors are based in Germany and this will not be funded under European Health Insurance Card. (EHIC).
The aim is hopefully to raise the funds to positively impact not only her life but the quality of life for her young kids.
The Funds raised from here will go to paying for 3 rounds of treatment, hospital admissions and travel expenses.
This has been very difficult time for my sister and my family and it is extremely hard putting ourselves out there to seek help, but we have no other options than this amazing platform.
We would be extremely grateful for any donations we receive.
One of the greatest of deeds before Allah, may He be exalted, one of the dearest to the Most Merciful, one of the highest in honour and greatest in chivalry, is showing kindness to the weak and the sick, taking care of them and looking after them.
It was narrated that Abu Hurayrah (may Allah be pleased with him) said: The Messenger of Allah (blessings and peace of Allah be upon him) said: “Whoever removes a worldly hardship from a believer, Allaah will remove one of the hardships of the Day of Resurrection from him.
Thank you in advance - please keep her in ur duaas
My sister is a young mother of three. Up until 4 years ago she had a clean bill of health until she had an adverse reaction to antibiotics . This severe reaction would send her to A&E and would become the start of her nightmare.
Once doctors tackled the initial symptoms she was discharged from
Hospital with no clarity of what was going on and hoped she would go back to normal ( like most allergic reactions) , however she would get worse as year went by with some days of relief , following days of hardships.
After a number or misdiagnosis she was eventually diagnosed with EBA ( Epidermolysis Bullosa Acquisita) chronic condition characterized by skin fragility causing blistering in response to friction, heat and trauma. This occurs because a genetic ‘spelling mistake’ means that the mechanism holding the layers of the skin together is defective, causing blisters to form, in this case mainly to the legs, feet and hands.
She went from being an active mother, wife and student to being bed bound and in severe debilitating pain EVERYDAY. She has been left to deal with her own wound care and was told by her consultant that his application for NHS funding ‘ will be declined ‘
Her life has become consumed by a progressive disease and is affecting nearly 90% of her body. Most recently her eyes have been affected and if it goes untreated can lead to long-term irreversible eye damage. After years of back and forth, the medical professionals in the UK have not been able to provide long-term effective treatment their aims have been heavily geared towards pain management.
This disease affects the biggest organ of the body- the skin. Over 90% of her body becomes covered in blisters as though her body has been burnt. The blisters later become large areas of bloody open wounds. This in turn leads to other complications such as infections.
Day to day life is very hard, simple task such as tending to her kids and husband is almost impossible. She has spent the last years living in highs and lows from being bed bound and in and out of hospitals with no end in sight.
Through research, we have found specialists who had positive outcomes with similar cases using the drug Rutuxinmab and a medical procedure called blood washing. we have initiated contact with top specialists in this field and they are willing to look into her case.
However, these doctors are based in Germany and this will not be funded under European Health Insurance Card. (EHIC).
The aim is hopefully to raise the funds to positively impact not only her life but the quality of life for her young kids.
The Funds raised from here will go to paying for 3 rounds of treatment, hospital admissions and travel expenses.
This has been very difficult time for my sister and my family and it is extremely hard putting ourselves out there to seek help, but we have no other options than this amazing platform.
We would be extremely grateful for any donations we receive.
One of the greatest of deeds before Allah, may He be exalted, one of the dearest to the Most Merciful, one of the highest in honour and greatest in chivalry, is showing kindness to the weak and the sick, taking care of them and looking after them.
It was narrated that Abu Hurayrah (may Allah be pleased with him) said: The Messenger of Allah (blessings and peace of Allah be upon him) said: “Whoever removes a worldly hardship from a believer, Allaah will remove one of the hardships of the Day of Resurrection from him.
Thank you in advance - please keep her in ur duaas
Organizer and beneficiary
Amz Shoa
Organizer
Warda Arshe
Beneficiary
