Breathing is Life profile picture

Breathing is Life

I am here for Networking

About Me


Alternatively if you do not have a Myspace account you can contact us by Clicking here
Click the banner below to visit our website www.breathingislife.com
"The more we share, the more we learn, The more we learn, the more power we have, The more power we have, the louder our voice In finding an answer and making a choice".
About the founders: I'm Rachy, 20. I was diagnosed with a rare interstitial lung disease called obliterative bronchiolitis (OB) when I was 15 years old. I worked as a stable hand and contracted the disease after repeated pneumonia (which I was more prone to due to being asthmatic) and hypersensitivity pneumonitis left me with massive amounts of damage. OB is a rare and life-threatening form of fixed obstructive lung disease. Bronchiolitis means inflammation of the bronchioles, the tiniest airways in the lungs. Obliterans refers to the fact that the inflammation of the bronchioles partially obliterates or destroys the airways completely. This leaves permanent damage in the form of fibrosis . I'm on oxygen 24 hours a day and rely on a non-invasive ventilator to breathe for me at night. Late in 2007, after 4yrs of living with lung disease I was also diagnosed with pulmonary hypertension , this condition causes the blood vessels around my heart and lungs to spasm and constrict leaving me with dangerously low oxygen levels. There is no cure and due to the complexity of my case I’m not suitable for transplant. Despite all of this I remain positive and smiley and enjoy my life, I believe the challenges I’ve faced in my life have helped shape me into the person I am today. I’ve met many inspiring people on my journey so far and I’m sure I’ll meet many more. Click Here to find out more about me and visit my Myspace.
Ayesha - Assistant Co-Ordinator Hi, I'm Ayesha, 15. I used to be a bubbly, lively kid like everyone else. Playing with my friends, running around and doing weird and wonderful things. I began to notice a problem around age 9 when I was diagnosed with asthma. It was fairly mild and I only used inhalers. However in February 2005 I had a bad attack which I needed hospital treatment for, from then on I was in hospital every month needing treatment sometimes I only got a week at home at a time. The attacks became severe I was admitted to Intensive care on a couple of occasions. I became dependent on a large amount of asthma medication. Despite this I still need regular hospital admissions and was becoming less tolerant of physical activity. In august 2007, when I was 14 we decided to move house. Soon after arriving in the new city I suffered another asthma attack and was admitted to the local hospital. Whilst there my condition was not improving so I was referred to a specialist. After tests including a CT scan and a Lung biopsy it was discovered that the diagnosis of asthma was incorrect and my lungs had another sort of inflammation. The disease was thought to be autoimmune . After about 3 months of waiting my specialist reached the diagnosis of Wegener's Granulomatosis which is a type of Vasculitis . It is systemic meaning it affects my whole body. It has affected my lungs leading to the formation of Granulomas and caused a type of interstitial lung disease . Because the disease was not treated correctly for three years I am now oxygen dependent and use a Bipap ventilator overnight. However I try not to let my condition get me down too much and try to stay as positive as possible. Click Here to visit my Myspace.
Sufferers of orphan lung disease often get a poor deal because there just isn’t enough sufferers of these diseases so very little money is put into finding new treatment or a cure. This means physicians are often inexperienced at dealing with the diseases. This inturn often means misdiagnosis and poor management of symptoms. 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.
Help us to help the British Lung foundation support people affected by rare lung disease.

My Interests

I'd like to meet:


Patients and families affected by lung disease:

Justine Laymond's Story I was a very active woman managing a department in a Health Club, and then part/time :- a children's entertainer, and a dance teacher with a great social life! Then aged 32, I was diagnosed with Lymphangioleiomyomatosis (LAM) .My life fell apart as the illness ravaged my lungs as hundreds of cysts grew inside my lungs blocking my airways - causing the cysts to burst. This motion then made my lungs collapse (total of 15 times). I endured so much pain and suffering and times whereby I thought that my life was over every time my lungs collapsed - as I was left gasping for each breath, and one time saying my goodbyes as the suffering was too immense.I stayed on oxygen 24hrs a day and became wheelchair bound, having nurses care for me - as I became so breathless. From once an active person to becoming like a vegetable. However, I always remained a very positive person and wanted to fight my battle even when left on life support for so many weeks, contracting so many infections including MRSA. There was not much hope left for me, but after waking up from my induced coma...my battle began to get back on the waiting list for a double-lung transplant. Little did I know, that almost 2 years waiting for this miracle - that my life would be saved within a few days. Click Here to read my full story and find out more about LAM.

Gaye's StoryMy name is Gaye Beasley. In November 2004 what I believed to be a bad cold, quickly turned into something worse. I was suddenly very short of breath just doing normal daily activities. I was weak and had no appetite and I had a very dry cough. I went through about five months of testing with no real diagnosis. In April of 2005 I underwent an open lung biopsy and was diagnosed with Acute Interstitial Pneumonitis , a rare lung disease for which there is no cure. AIP causes inflammation in the air sacs of the lungs which leads to scarring or fibrosis of the lung tissue. This disease makes it very hard for me to breathe and therefore my life has changed tremendously. I had to stop working and I am on oxygen 24 hours a day. I take a lot of medication and I attend a pulmonary rehab group at Duke University four days a week, where I work out for about two hours. I have been evaluated for a lung transplant and that would be my last resort, however, I will not give up hope on finding a cure. Click Here to visit my Myspace.

April's story In 1999 I was starting my life. I had just gotten married and found out I was pregnant with our first child. That is when my symptoms started. I was extremely sick during this pregnancy. I had extreme shortness of breath, I was passing out, I had heart Palpitations and extreme fatigue. I was told it was due to my pregnancy and then referred to my primary care physician after I gave birth. I went about my life thinking that I had severe asthma. Then in 2002 after giving birth to our second child I started to go down hill. I couldn't even walk to my daughters room without being completely out of breath and on the verge of passing out. I went through every single test known to man until finally July of 2003 I was diagnosed with Idiopathic Primary Pulmonary Hypertension . At first I was extremely sick. I was told I would be lucky to live a few months. That is not the fact as we are in 2007 and I am doing the best I have ever done. I am now on a drug called SubQ Remodulin . Finally after finding the perfect treatment for me I am living as close to a normal life as I can get. Thanks for reading my story and stay positive. There is always a light waiting for you! Click Here to visit my Myspace and find out more about Pulmonary Hypertension

Jayna's Story I have a rare disease called lymphangiomatosis (not to be confused with lymphangioleimyomatosis). I am on oxygen 24/7 and use a BIPAP ventilator at night. I've had a lung transplant already but there are no treatments for my underlying disease. I'm stable right now and pray that my lung function stays where it is. Here's my story.I grew up thinking I had a bone disease. I was 6 when I first broke my leg and 4 years later I was diagnosed with lymphangiomatosis , a very rare malformation of the lymphatic system. When I was 14 I went to my bone doctor for a broken rib and he immediately sent me to a pulmonologist because he saw I had fluid around my right lung on my xray. I was drained several times, had a pleurodesis , an extremely invasive surgery during which they finally managed to stop the fluid. In my early 20's, the fluid came back on the left side. I again had a pleurodesis and fortunately it worked the first time around. After that, I was stable again for a few years. I began to have terrible morning headaches, was short of breath just walking on a flat surface, and had other symptoms which I found out later were due to my high carbon dioxide and low oxygen levels. I was told that my disease had invaded the lung tissue and that my lungs were beyond repair. I was in end-stage lung disease and needed a transplant. My husband and I moved to North Carolina from Florida. We chose Duke Hospital because a lung transplant had never been done before on a patient with lymphangiomatosis and we wanted the best. I got my new lungs in May 2004 and the surgery and recovery was the most difficult experience. I had a tracheostomy and was hospitalized for 4 months. My body accepted my new lungs, but my chest wall had been damaged from previous procedures and bone fractures so when I left the hospital, I still required oxygen. It's been 3 1/2 years and I've had no problems at all relating to the transplant, but I never was able to come off of oxygen. I'm not able to go back to work, so I've dedicated my time to starting an organization to support patients with this disease, It's called the Lymphagiomatosis & Gorham's Disease Alliance.

Charities, organizations and websites that support and fund research into rare lung disease.

We support the Pulmonary Hypertension Association UK and the 'Hands Off' appeal against NICE.

BPOLD Supports research into 9 orphan lung diseases in the UK.

We support the Puffin Appeal and regeneration of some of the UK’s top hospitals in the North of England.

The British Lung Foundation Supports 7 million people across the UK with lung disease and is the only UK charity that aims to cure all lung diseases.

Show your support, copy the code below to display our banner on your profile. Paste the code into the 'about me' section in your profile (or wherever you like!).
Show your support, copy the code below to display our ribbon on your profile. Paste the code into the 'about me' section in your profile (or wherever you like!).

My Blog

A long over due update on us...

Well it has been a very long time since we have posted anything and I apologise for the neglect to our friends on here and the page in general. So we'll start off with a quick update on Nattie. She...
Posted by on Thu, 13 Nov 2008 18:52:00 GMT

breathingislife.com & an update on us

Our new website breathingislife.com is now offically up and running! We're adding content all the time so if you've sent us your story it will soon be up!Click the banner below to visit our websiteIt ...
Posted by on Sun, 20 Jul 2008 10:52:00 GMT

Ayesha in newspaper article (Wegener’s Granulomatosis)

Ayesha in heartfelt pleaJun 9 2008 by Paul Loraine, The JournalAyesha Ahmed, 15 of Fenham, who suffers from a rare immune system disorder.A TEENAGE girl with a rare immune system disorder which has le...
Posted by on Sat, 14 Jun 2008 21:35:00 GMT

an update from us...

We appologise for the recent neglect of this page. The holidays have been quite difficult for us. Rachy has been in hospital for almost 5 weeks, back in November she suffered a near fatal reaction to ...
Posted by on Thu, 17 Jan 2008 13:20:00 GMT

Story Number 4, Masons Story - Pulmonary Hypertension

Mason's StoryI was living a normal life before the lung disease had hit. I was working, going to school and active in motocross. I was never an athlete as I was over weight but around 16 I was doing a...
Posted by on Mon, 26 Nov 2007 20:35:00 GMT

Story Number 3, Kim's Story - Idiopathic Pulmonary Fibrosis

Kim's StoryThis story is about my father. His name is Robert. He had a chronic cough for as long as I can remember. In the summer of 2006 he finally went to the doctor to get it checked out. They took...
Posted by on Mon, 19 Nov 2007 10:11:00 GMT

Story Number 2, Tara's Story - Systemic Lupus Erythematosus

Tara's Story For a long time (especially after a round with pulmonary emboli) my blood results made no sense. I couldn't breathe but there was no Interstitial Lung Disease. My pulmonary function test...
Posted by on Mon, 12 Nov 2007 09:30:00 GMT

Story Number 1, LaQuesta's Story - Eosinophilic Granuloma

LaQuesta's StoryI'm so glad I came across your site. I too have a rare lung disease, called Eosinophilic Granuloma. I was diagnosed when I was 16 after my lungs kept collapsing. I was on the list for ...
Posted by on Mon, 05 Nov 2007 11:29:00 GMT

Dreams and fantasy - please read our poem x

Dreams and Fantasy They found a cure for rare lung disease todayIt has finally come our way You take a pill and your lungs become all brand newOnce again&you can breath like you used to ...
Posted by on Sat, 27 Oct 2007 11:01:00 GMT

Getting to know you...

Hey Guys,We are looking for people to share their stories with us, whether it is you yourself who is suffering/has suffered with a rare lung disease or you have or have lost a family member to rare lu...
Posted by on Fri, 26 Oct 2007 17:00:00 GMT