Life can be sometimes uncertain for Rachael and Ayesha. Both 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 “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.
The information provided by this website is intended for your general knowledge only and is not a substitute for medical advice and treatment. Breathing is life is hosted by patients for patients to provide support only, medical advice about your condition should be obtained from your doctors. The articles on this website are solely the opinions of the authors, we may not necessarily agree with the opinions and views expressed. Breathing is life does not take responsibility for the content of external websites that may have linked this website. Also note that although we do change information contained on this website frequently, medical information changes rapidly. Therefore we cannot guarantee the accuracy of the information we provide. If you find information on our website that you believe contains errors please contact us.
Please review any news or information you see here with your own doctor in order to obtain actual medical advice. We do not intend to replace any form of medical advice or treatment, you should never disregard medical advice or delay in seeking treatment.
