My girlfriend Pam and my mom Paulette December 2012
When it all began
Around 3 years ago my mom woke up in the middle of the night due to a coughing fit that she could not control or stop. Since then her condition has been slowly getting worse.
A little while after that night my mom started to notice her hands and feet swelling and not returning to normal. Alarmed by this she decided to visit her family doctor and get herself checked out.
Originally her family doctor diagnosed her with a possible case of rheumatoid arthritis and possibly Lupus. She was prescribed some medication to try and help the swelling go down. This medication of course did not work being as she didn't really have the arthritis or Lupus issues.
Trip to the Ottawa General ER
In February 2012 her condition deteriorated to the point where she was feeling terrible for a number of weeks and having a hard time breathing. She decided to check into the ER at the Ottawa General Hospital and wait however long it would take for someone to take a look at what was going on with her.
The trip to the ER proved to be beneficial in the sense that she was finally diagnosed with what was actually going on. Unfortunately what she was diagnosed with is a terrible disease called Scleroderma.
Scleroderma is a chronic systemic autoimmune disease. There are two major forms: Limited systemic sclerosis/scleroderma and Diffuse systemic sclerosis/scleroderma. Unfortunately my mom has the more severe form.
February 2012 - Present
Diffuse systemic sclerosis/scleroderma is rapidly progressing and affects a large area of the skin and one or more internal organs, frequently the kidneys, esophagus, heart, and lungs. This form of scleroderma can be quite disabling. There are no treatments for scleroderma itself, but individual organ system complications are treated.
Tests and X-Rays from the trip to the ER not only diagnosed my mom with Diffuse systemic scleroderma but also provided an explanation behind why my mom had been having a hard time breathing. As it turned out, the disease had started to attack her lungs causing scar tissue which appeared on the x-rays.
The doctors that she had been dealing with since her visit to the ER submitted her as a candidate for a double lung transplant which unfortunately is a procedure that is not done in Ottawa. In January of 2013 my mom moved to a small town close to Toronto in order to continue testing and hopefully be placed on the waiting list for the double lung transplant.
My mom is fortunate enough to have moved in with her sister who is helping to take care of her. She is now on oxygen for the most part of her days and awaiting further testing to find out if she can be put on the lung transplant waiting list.
Pam and I came across an article where a woman in London Ontario who also has scleroderma has decided to pursue a stem-cell transplant procedure in Chicago which has proven to stop the disease in some cases and even go so far as to repair some of the damage that has been caused.
This woman's friends and family had put up a website and through word of mouth in a little over a months' time had managed to raise 45,000$ of the 125,000$ that it will cost for the procedure.
Hence, Pam and I have decided to put up this website to try and raise the funds needed to get my mom the stem-cell transplant. Unfortunately the procedure is still in testing in Canada which is why it needs to take place in the USA. I fear that my mom may not have enough time left to wait until stem-cell science evolves in Canada.
If you would like to make a donation through PayPal please by all means click on the "Donate" tab at the top of the site in order to place your donation.
All monies raised through this initiative will go directly to funding a stem-cell transplant procedure for my mom and if by some small miracle we manage to raise more than the 125,000$ required for the procedure + 23,000$ for taxes all additional funds will be sent to a scleroderma related charity to help fund the research around the disease.
The Facts on Scleroderma
Putting the two Greek words sclero (meaning hard) and derma (meaning skin) together paints a picture of the condition known as scleroderma. In this condition, the skin becomes thicker and harder.
Scleroderma belongs to the same family of autoimmune diseases as lupus and rheumatoid arthritis. It shares many features with these illnesses, including the fact that it often appears in adult women. Women are 3 to 5 times more likely to develop this condition than men.
Another thing it has in common with these diseases is that it can cause a wide range of different symptoms and complications. For some people, it's a lifelong nuisance; for others, it's a disease that quickly worsens and may lead to death. This disease is not contagious, and it is not inherited.
Causes of Scleroderma
The exact cause of scleroderma is unknown. Scleroderma is a rare autoimmune disease, a disease in which the immune system attacks its own healthy cells, causing damage.
Normally, the immune system helps the body deal with infection and injury. People with scleroderma produce too much collagen, a protein that makes up connective tissue in tendons and ligaments.
Depending on the type of scleroderma a person has, the extra collagen is deposited in either the skin or in other organs in the body, or both, which causes hardening of the tissues.
In diffuse scleroderma, people experience thickening of the skin of the arms, legs, face, chest, and stomach.
Inside the body, damage to the lungs, kidneys, heart, blood vessels, bowel, esophagus, and joints may occur.
If many of these organs are affected, the condition may become life-threatening.
This more serious form of scleroderma is occasionally fatal, and nearly always debilitating.
Symptoms and Complications of Scleroderma
Symptoms of scleroderma include:
thickening or hardening of the skin
numbness and pain in the extremities brought on by cold or emotional stress
loss of flexibility due to gradual hardening and tightening of the skin, especially on the arms, face, or hands
joint stiffness or pain (elbows, knuckles)
digestive problems including difficulty swallowing, problems absorbing nutrients and less muscle activity in the intestine causing constipation or diarrhea
curling and stiffening of the fingers
puffy hands and feet, most often noticed in the morning
Diffuse Scleroderma Damages
The most common forms of damage from diffuse scleroderma are:
Gastrointestinal - heartburn caused by hardening of the esophagus, low absorption of nutrients and abnormalities in the way food moves in the intestine may happen to some people with scleroderma.
Joint - not so much to the bone itself as to the skin, tendons, and other tissue. This can cause the joints to lock in place when flexed. Tendinitis and a crackling sound when you move are also possible.
Lung - scleroderma can cause pulmonary fibrosis, a scarring of the lungs that interferes with the way oxygen is transferred. The scarring can lead to pulmonary hypertension (high blood pressure in the blood vessels going from the lung to the heart). This can in turn damage the heart, leading to serious, irregular heartbeats, and sometimes heart failure or sudden death.
Heart - scleroderma can also attack the heart directly, replacing healthy muscle tissue with scar tissue.
Liver - the biliary ducts that drain the liver can be scarred, possibly damaging the liver itself.
Kidney damage - kidney failure can lead to death in scleroderma when these internal organs are affected.
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Thank you so much to all who have made a donation!
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My mom Paulette and my girlfriend Pam June 2013
Can You Help Us Help My Mom?
Click on the tabs at the top of the site to read my mom's story, learn more about Scleroderma, send a note to my mom, or donate to our cause!
In February 2012, my mom was diagnosed with Scleroderma. This disease is slowly disabling my mom and my girlfriend and I would like to do whatever we can to help her make it through this terrible situation.
Scleroderma is attacking my mom's skin causing it to tighten and itch beyond belief and it is also attacking her lungs where they are now only able to produce around 40% of the oxygen required.
Lungs that are producing insufficient oxygen can lead to serious, irregular heartbeats, and sometimes heart failure or sudden death.
She is currently undergoing tests to determine if she can be put on a waiting list for a double lung transplant and is also following a treatment involving chemo and other medications which are supposed to slow down her immune system which in turn should slow down the progression of the disease.
She has been following this treatment for a few months now and unfortunately it doesn't seem to be slowing anything down. Pam and I decided to create this website to try and raise enough money for her to undergo a stem-cell transplant in the USA.
Stem-cell transplants have been successful in halting the disease in its tracks and even going so far as to repair some of the damage that was caused by scleroderma!
Want to help us spread the word? If so please by all means click on the sharing icons below to spread the word amongst your friends!
Have a question about our charity or it's legitimacy? I would be more than happy to speak with you!
My name is Daniel Errett & my girlfriend's name is Paméla Labrie, you can reach us at 613-327-6212 or firstname.lastname@example.org.