I realize that all of you are already taking steps to protect your lungs against pollutants, secondhand smoke and other irritants, but I just want to remind you that during the summer months don’t overexert yourselves and place added stress on your lungs. Also make sure you have changed the filters on your air conditioners. Cool moist air can be a breeding ground for molds.

Since the last newsletter, I have received mail from people who have found the site because themselves or a family member has IPH. I would particularly like to thank those that responded to my e-mail to contact them and give them hope and encouragement.

I have also received correspondence from a woman who wrote a research paper on IPH while studying to be a respiratory therapist. She has given me permission to post the paper one the site. I have also received a clinical history from a young man from Spain who was diagnosed with IPH at age 4 and is now 30 years old. He has also given me permission to post this on the site.

The Kansas City Star did a nice article on Stachybotrys mold recently. I spoke with the author of the article, whom I asked about linking to that article on their website. He was supportive of the idea, though since the newspaper has changed hands there is a charge for any reprints of an archived article. I have discussed this issue with others at the Star and hope to be able to bring it to the site.

Since I have started this website, I have received letters praising the efforts of your physicians and specialists in lifesaving efforts and keeping many of you or your children healthy. I would like to post the names of doctors that have experience working with IPH and hospitals that also treat IPH patients. In the case of a person that has just been diagnosed having a worldwide network of medical professionals who care for IPH patients could be the difference between life and death.

One of the best things that you can do is to learn as much about IPH as you can. Go out and scan the medical literature, ask your doctor as many questions as you can, learn about what all of the medical tests are and what they mean. If you have to go to an emergency room during you or your child’s bleeding episode, you must be ready to direct the medical personnel to look for the correct symptoms. I have found that even in some hospitals that treat IPH, the ER personnel are not always aware of the disease.

Another thing that you can do in your web travels is to constantly search for articles, websites and people inquiring about IPH. If you find a person asking about IPH in one of the newsgroups, direct them to this site. If you find a site that may have some relevant info in the diagnosis and treatment of IPH, send me the URL and I will put it in my list of links.

When I was searching the Kansas City Star website, I found a 1992 article about a teenager that died from IPH while waiting for a lung transplant. Her name was Pam Elias and the significance of the article is that after almost 10 years searching for info and people affected by IPH after my daughter’s diagnosis I found out about this person’s struggle right as she was dying. I don’t want to lose any more people to IPH, especially for lack of information. I also don’t want anyone to have to search for years to find others that they can relate to.

Thanks

Omer Sayles