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.
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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.
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