Attention! Please donate to Rachael's Transplant Fund!
Founder, Rachael is now in desperate need of a double lung transplant and will be going overseas to Duke University for her transplant. She was unfortunately turned down in the UK due to being too unwell and now transplant in the USA is her last hope.
This is going to be a costly process and we will need to raise £400,000 ASAP if we are to save her life in time so please donate generously any amount is appreciated and is helpful.
Keep up with her progress at thetransplant2.blogspot.com
**UPDATE**
Paypal have started to take a significant portion of the donations that we have had received (their fees) so please where possible avoid donating via Paypal at all costs.
Cheques can now be made payable to 'Rachaels Future Hope' and sent to:
32 Rosehill Road, Ashton-Under-Lyne, Lancashire, OL6 8HR
A seperate account has now been opened for Rachaels Future Hope, the account details are as follows:
Account Number: 8312 7052
Sort Code: 20-02-77
Barclays Bank Account
Thank you
To donate click on any of the donation buttons dotted around the website.
Life can be sometimes uncertain for Rachael, Natalie and Ayesha. All three girls suffer from rare lung disease. Their Diseases are so complex top medics around the UK have been mystified. Due to poor understanding of their diseases the girls have endured misdiagnosis sometimes on several occasions. Breathing Is Life is a UK based website set up to support newly diagnosed sufferers and offer advice to families and sufferers being affected by these diseases.
Sufferers of rare lung disease often get a poor deal because there just aren’t enough sufferers of these diseases so very little funding is put into finding new treatment or a cure. This means physicians are often inexperienced at dealing with the diseases. This in-turn often leads to misdiagnosis, poor management of symptoms and strained doctor-patient relationships. Drug companies do not see profits in rare diseases and numbers are often too small to do good clinical trials.
This leaves families and sufferers feeling lonely and isolated. At the moment the prognosis for people with rare lung disease is often considered poor, we want to change that.
The girls refuse to be beaten and instead of wallowing and hiding away they have decided to speak out and fight back.
Rachael who originally came up with the idea for Breathing Is Life explains “Last year a friend of mine who is also a doctor said to me 'I'm sorry Rach I think you were just too rare for them'. That made me think, this shouldn't be happening, I shouldn't be suffering just because I am too rare for medicine to understand. That is what initially inspired me to start up the Myspace and then Breathing Is Life. In a bid to reach out to others in similar situations and get the message across that they are not alone.”
At an age when they should be out partying with friends, planning their futures and living out their dreams, these brave young women are facing the fact that they may only have a combined lifespan of a decade. Their diseases go neglected by society as they are so rare, but instead of complaining these girls have decided to get on and provide the support they are so severely lacking.
Rare lung Disease:- The Facts
- Rare lung disease poses a challenge for physicians to diagnose and treat. For the majority of these diseases there is no simple test that can determine what it is the patient is suffering from.
- Rare lung diseases are often described as “orphan” lung diseases; highlighting the neglect these conditions suffer due to their rarity.
- Out of 15,000 children born with a disability in the UK each year, at least 1,200 will have a rare condition. Most rare conditions are known as "orphan diseases", meaning conditions which are so rare that they have not attracted funding for the development of treatments.
- There is currently no monitoring or collation of statistics for rare disorders, individually or collectively. Only support groups are keeping any records about how many people are affected by each disorder.
