NEAL CONAN, host:

This is TALK OF THE NATION. I'm Neal Conan, in Washington.

In the early '80s, Pat Furlong learned that both her sons had an extremely rare form of muscular dystrophy called Duchenne, a fatal genetic disorder that affects only about 20,000 boys around the world every year.

After the diagnosis, her doctor told her there was no hope or help available. He said: Just take them home and love them. They're going to die.

Pat ignored that advice and created a nonprofit focused on Duchenne muscular dystrophy, now the largest of its kind in the country. Today the website has over 3,000 members: parents, grandparents, doctors, researchers, and some patients who find advice and comfort from others coping with the disease.

And they are not alone. A new joint study between the Pew Internet Project and the California Health Care Foundation finds that one in five Internet users go online to find others with similar health concerns. After receiving a diagnosis, especially for rare diseases, more and more people turn to the Web for peer-to-peer health care.

If you do this, what do you get out of it? Give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, Libyan Americans keeping in touch with friends and family back home. But first, Pat Furlong, the founder and CEO of Parent Project Muscular Dystrophy, joins us on the phone from her office in Middletown, Ohio. Nice to have you on the program today.

Ms. PAT FURLONG (Founder, Parent Project Muscular Dystrophy): Thank you, Neal. It's nice to be here.

CONAN: And when your sons were first diagnosed with Duchenne, I guess there was no such thing as the Internet.

Ms. FURLONG: No, Neal, there was no such thing as the Internet. You were quite isolated. It was unlikely, even at a doctor's visit, that you might see another family.

CONAN: And that diagnosis, I mean that had to be one of the - it's hard to imagine how horrible it was.

Ms. FURLONG: It is hard to imagine how horrible, even when I look back. That day, it felt like, walking out of the doctor's office, that the sun shouldn't even shine, that the world had ended in so many ways.

CONAN: And sadly, the diagnosis was not wrong. Your sons Christopher and Patrick died when they were teenagers.

Ms. FURLONG: That's right. The diagnosis was accurate.

CONAN: And obviously, you know, our condolences for that. But...

Ms. FURLONG: Thank you.

CONAN: ...why did you decide to form a group to reach out?

Ms. FURLONG: Well, I think in many ways, it's the creative use of outreach, isn't it? There had been no history of Duchenne muscular dystrophy in my family, and the physician that I saw basically suggested that there was.

Later, much later, we learned that certainly about 30 to 40 percent of the cases are spontaneous, and so in my case I was a spontaneous carrier. So in conception I was created as a carrier with a genetic mutation, and therefore all of my pregnancies, even though I didn't know it at the time, would carry a 50 percent risk of a young boy having Duchenne or a daughter being a carrier.

And so you are totally alone, and in that I really had to look at my boys and try to deliver some hope. So I thought the best thing I could do was understand what the landscape looked like, what was being done, who was doing whatever it is that they felt was necessary, where the gaps might lie and how we would incentivize industry and the government to begin to think about Duchenne muscular dystrophy.

CONAN: And how successful have you been?

Ms. FURLONG: I think we have been quite successful over the past 16 years. There certainly has been a sea change of investment. The - one of the monumental parts of Duchenne are - places in Duchenne is the identification of the gene in 1986 and '97.

We started Parent Project Muscular Dystrophy in 1994 and in 1995 established the first Duchenne muscular dystrophy research center at the University of Pittsburgh, and following another one at UCLA. And in addition to that, we began really talking to our representatives in Congress and lobbying the federal government about the importance and the relevance of Duchenne muscular dystrophy research.

In 2000 the Office of Rare Disease held a workshop on Duchenne muscular dystrophy, and in 2001 a bill called the Muscular Dystrophy Care Act was introduced in both the House and Senate.

CONAN: And how much difference did the Internet make when you could reach out to people and connect with people all over the world?

Ms. FURLONG: Well, the Internet makes an amazing difference in so many ways and on so many levels. When we first started, there was no Internet, and shortly, probably within a year or two, we began to enter into the Internet, the world of the Internet.

We put up a website which later, about a year later, had a chat room or a message board where people could leave messages and other people would enter their message. But it wasn't a conversation. It was really snippets of conversation that may or may not be answered.

So as that evolved, we now have a community chat room where people are having conversations about care, about research, about support, about clinical studies. And so this has really evolved over time and really become the source for connection with people with rare diseases.

CONAN: And how does that work? Is this a paid group?

Ms. FURLONG: No, it is not a paid group. So what happens - I think what happens most of the time when people get a diagnosis is they go to Google, and they either - they can try to get their own diagnosis by putting symptoms in, or once they have a name, they put in a word, in this case Duchenne muscular dystrophy.

And when you do that on Google, I think you come up with loads - more than - thousands, actually, of entries that you can sort through. And in that you find a chat room that you can go in and share, you know, who you are, what the diagnosis is, how it has affected you. And people will join that conversation.

So this is really the point of access in terms of Google and then finding a place where you can call home in terms of your knowledge.

CONAN: And it must be, at least in some respects, very emotional. I mean, yes, clinical, but people like you, and there has to be some element of unknowingly you passed this along to your sons. It's important to talk with people about that.

Ms. FURLONG: Yes. You know, Neal, people go on for all sorts of reasons. And some of it is just to find comfort, right, to really be able to support yourself, and as a guide to the emotional side of this disease.

But there's also the other side of this disease, where clinical care and research, what is going on, what does hope look like, what might I consider doing for my son that might extend his lifespan, might improve his quality of life?

So I think it's both of things, both support and clinical capability.

CONAN: Also with us is Susannah Fox, author of a peer-to-peer health care survey that came out on Monday. She's associate director of digital strategy for the Pew Internet and American Life Project. And she's kind enough to join us here in Studio 3A. Nice to have you with us today.

Ms. SUSANNAH FOX (Associate Director of Digital Strategy, Pew Internet and American Life Project): Thank you.

CONAN: And is there - we're talking with Pat Furlong about her group. Are there similar kinds of groups for other rare diseases?

Ms. FOX: What we see in the data is that there's probably a group for almost every disease. When we started the survey, talking just to the general population, we found that it's people who are the worried well who are reaching out to find other people like them, but also, and more prevalently, the people who are living with a chronic disease or rare disease.

CONAN: And they are also presumably parents, friends, loved ones.

Ms. FOX: Exactly. One of our key findings is that half of health searches are actually on behalf of someone else. It's - the doctor's office can't hold all the people who want to be there. And they go online after the doctor's appointment to, frankly, recover from it, and do that initial Google search and, hopefully, if they can, find a community like the one Pat described.

CONAN: And they're not coming for necessarily a diagnosis. You go to a doctor for that, or, you know, even if you're Googling your symptoms, that's WebMD or something like that.

But Pat Furlong, when people first come to the site, what do you find they're most interested in?

Ms. FURLONG: I think they're most interested in knowing that they're not alone. And the second - once they sort of get into the group, then they are looking to the group for advice about what kinds of things they might be thinking about or what questions they might be asking in order to help their son.

CONAN: And what kind of questions do you get?

Ms. FURLONG: Questions that you get would start out with diagnosis and genetic testing: What kind of mutation does your son have? And that's relevant because some of the strategies now that are applying to potential treatments of Duchenne really rely on the mutation.

So the first question, it might be even code words: What is your son's mutation? How old is he? What symptoms does he have? Is he on steroids?

So they go through the gamut of the various interventions that are now recommended by physicians. They also select physicians in this conversation: What physician did you see? What capability has the clinic? Do they perform clinical studies?

So this really evolves, and obviously depending on the age of the child and the degree of progression, then those questions may change over time.

CONAN: And given the nature of this disease, you'd think most of the people on the site would be parents.

Ms. FURLONG: You know, we - initially, when we started and had message boards, it was parents, and we were only - and we only saw the parents' voice. And wonderfully enough, now the lifespan has increased in Duchenne muscular dystrophy.

So now we're hearing this new voice, and that is the voice of the boys and young men who have Duchenne muscular dystrophy, who are contributing to their own care in terms of, you know, making decisions on their own and suggesting things that parents might or might not do and things that they would consider joining(ph) in terms of clinical studies.

So I think now we do have a really robust clinical voice online.

CONAN: And I imagine that's changed things quite a bit.

Ms. FURLONG: It changes the dynamic considerably because obviously parents and children don't always agree on what sorts of opportunities to take advantage of or what their dreams are that they're hoping or wishing for.

So parents may have one sort of view of life, and the boys may wear glasses looking at life in a different way. So I think it's a really wonderful, valuable voice that we are all together having these discussions.

And from the parents, who were the sort of original community, we are learning from our sons about what they would like to do and what things may have value in their life.

CONAN: And I wonder: Have you gone to other sites for other rare conditions to see if you could pick up any tips on how to operate yours?

Ms. FURLONG: Yes, absolutely. We do look at other sites that are diseases that are related and not related to Duchenne muscular dystrophy because I think it's important.

Often you'll find perhaps a research strategy that they're looking into that might well apply or a particular type of care; for instance, for -in this case heart failure, because heart failure is very common in Duchenne muscular dystrophy. So we learn from other sites and more common conditions about what they're using in heart failure and bring that back and think about how we might manage.

And also support, you know, what kinds of support we need, how we can help - we've got adolescents with Duchenne and young boys with Duchenne, now adults, so how we can help really branch this not only into other rare conditions but across common conditions as well.

CONAN: Well, we wish you the best of luck, and congratulations on the establishment of the group. But we are so sorry that it had to happen at all.

Ms. FURLONG: Thank you. I am sorry it had to happen, for sure, but at the end of the day, you know, we are a community now, and so I - if we had to pay that price, sad as that is and forever painful that it will be, I think Duchenne is better off that my sons lived.

CONAN: Pat Furlong, thanks very much for your time today.

Ms. FURLONG: Thank you.

CONAN: Pat Furlong, founding president and CEO of the Parent Project Muscular Dystrophy, PPMD, which focuses on the study of Duchenne muscular dystrophy. You can find a link to her organization on our website. She joined us from her office in Middletown, Ohio.

When we come back, we're going to continue talking with Susannah Fox, of the Pew Internet and American Life Project about rare diseases and the people who go online to search for symptoms, for emotional support and for medical information. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(Soundbite of music)

CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington.

The Pew Research Center surveyed just over 3,000 adults about how they use the Internet to care for themselves and for their loved ones. One woman living with a blood disorder wrote in the online survey about the reasons she turns to her digital peers: We can say things to each other we can't say to others. We joke about doctors and death. We cry when we need to. Together, we are better informed. The support is powerful and empowering.

If you visit online communities for help with your medical concerns, what do you get out of it? Tell us your story, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Our guest is Susannah Fox, co-author of the Pew Internet Project survey on peer-to-peer health care. And let's see if we can go right to a caller. This is Kelly(ph), Kelly with us from San Antonio.

KELLY (Caller): Yes, hi.

CONAN: Hi, Kelly.

KELLY: Three years ago I found myself in a lot of pain, and I was diagnosed with a disease I had never heard of. It's called Ankylosing Spondylitis and it's an inflammatory arthritis that affects mostly young people.

And I only found one online group, and because it was so unknown, I felt compelled to start another group. We called it ASAP, Ankylosing Spondylitis Awareness Project. And our goal is not only support but to raise awareness, because it affects 2.4 million people in America, more than MS, Lou Gehrig's and cystic fibrosis combined, yet nobody's heard of it.

And so the Internet has just been invaluable to me because it's an invisible illness. My pain is - it's hidden. People don't know I'm sick when they see me, but I feel it inside. So it's hard for other people to understand what it's like.

CONAN: And you need some skills to start a website, don't you?

KELLY: Well, we started it through Facebook, and Facebook allows you to create groups, and we started slow, as a group. And eventually we've actually created a website called www.hurtingbuthopeful.com - excuse me, .org.

And, you know, it's starting off slow. We now have 3,000 members. And I practically run it - I do, I run it from my house with a friend who has AS as well. The most important thing is, I find they're the only ones who understand what I go through. They're the only ones who can give me the advice, like your guest, you know, mentioned before.

Nobody else knows, and this gives me peace of mind that I'm not the only one going through this, I'm not the only one suffering, in the hope that there will be, you know, more media attention to this disease so that we can find a cure one day.

CONAN: Well, Kelly, we wish you the best of luck, and congratulations on your enterprise.

KELLY: Thank you very much. I really hope that it can help more people.

CONAN: Appreciate it.

KELLY: And I appreciate you talking about such an important topic.

CONAN: Thank you. Susannah Fox, that there's no one else who can understand what I'm talking about, that sense seems to be a major factor for a lot of the people who use these sites.

Ms. FOX: It's a major factor for people who are living with a rare disease. But our research shows that it's actually a factor for all sorts of people. We have heard from young people who are trying to make choices about contraception, for example, and they want to talk to someone like them.

And it's this impulse that we have to share our stories and to find other people like us. Someone who is just ahead of you on a decision might be the exact right person to give you advice.

CONAN: So it can be applied to something as rare as, you know, a very unusual disease or as common as adolescence.

Ms. FOX: Exactly.

CONAN: So - all right. Let's see if we can get another caller on the line. Let's go to Letitia(ph), Letitia with us from Charlotte.

LETITIA (Caller): Hi, Neal. It's actually Letitia.

CONAN: Excuse me. Go ahead.

LETITIA: Close enough. Thanks for taking my call. I just wanted to call and share my experiences. As a parent, when my young child, actually newborn, was diagnosed with a heart defect, it actually was not terribly uncommon, but we found it very useful as parents to go to the Internet and connect with other parents who had been through the experience of open-heart surgery on an infant, which we were preparing for.

So we went - I think certainly the doctors we talked to were very adept at preparing us with a lot of facts and figures and letting us know what was happening, but it's a different kind of preparation, I think, that we got from just chatting, that conversation that we had with other parents and what they had been through.

And one thing that we were not looking for but that really helped me the most in preparing for what we were about to go through was seeing a picture that someone had posted of her own son immediately after the surgery.

CONAN: Wow, and I can still hear the emotion in your voice.

LETITIA: Yes, I think, you know, there's enough emotions going on just with having the risk, knowing your son is in there with his heart open. And we also have a lot of positive emotions of relief that it was over, gratitude for the doctors who could help us. And I think(ph) the visual impact of what you see - I mean it's not pretty.

Like I said, we were grateful for it. Everything was fine. He was finished. He's okay. Everything looked like it was supposed to look, but it's still, it's not a pretty sight.

And so when I (unintelligible) about that picture that someone else had posted, I kind of got to experience that visual shock and get ready for it before I got to see it with my own son.

CONAN: That's - thank you very much for that, Letitia. That's - did I get it right that time, by the way? Anyway, thanks very much for the phone call, appreciate it, and we wish your son the best of luck.

What she said was interesting, that yes, the emotional support, and we've talked about that, but the clinical information, the interchange with doctors - how is this changing health care?

Ms. FOX: What we're seeing is that people are not turning away from health professionals. They are - people in our survey said that when they need a diagnosis, over 90 percent say they want to talk to a health professional - if they need information about prescription drugs, if they need a referral to a specialist. All those technical details about health care, people still want a health professional to be at the center.

But there are practical tips. There is emotional support. Like Letitia described, nobody can tell you about the shock of seeing your baby post-surgery better than another parent. And one of the things that I've looked at in my research is Flickr, the photo-sharing site.

If you do searches for medical terms on Flickr, you will see people who are posting photo essays about their own chemotherapy. And so if you're about to go through a certain kind of treatment or a certain surgery, or if you're curious about the progression of a disease, you can go on the Internet and see these images in advance and prepare yourself.

CONAN: Would YouTube be used for that purpose as well?

Ms. FOX: Yeah, YouTube is part of that as well, and you can actually watch surgeries on YouTube and get ready for it.

CONAN: Is there some danger, though, that these groups can to some degree take the place of medical professionals, that people can start seeking diagnoses?

Ms. FOX: There's a - you know, there's a theoretical danger, but over and over in our surveys, when we ask people about that, we find that people are still likely to talk to a health professional when they have a specific health question, and they talk to peers and friends and family when they need day-to-day tips and more practical advice.

And also, as Pat Furlong described, you will not find a more passionate detective than a mom who is trying to find out what she can do for her child. And I loved her phrase, the creative use of outrage. We see that a lot in our data.

CONAN: Here's an email we have from Lindsay(ph): My mom was diagnosed with ovarian cancer in 2009. She's now cancer-free and has been for almost two years. She is constantly going to an ovarian cancer community online and will read other women talk about their experiences with ovarian cancer for the first, second, fifth time.

It's making her paranoid, and when these women lose their lives, she takes it hard. I wish she wouldn't go to the community and that she could move on with her life being cancer-free.

There are other parts of the computer that can be addictive, and I guess this one can too.

Ms. FOX: Yeah, you know, basically the Internet is just a wire. It can be used for good or for ill. And most of what we see is that it's used for good.

CONAN: There is some - talking about rare cases, I read a story in a British newspaper, The Guardian, about people who go online and pretend to have diseases, rare diseases, to get the kind of emotional support. People spent obviously weeks or months doing research to find out what their symptoms should be.

Ms. FOX: Yeah, it's another possibility. And again, what's much more common is the possibility that someone will uncover a mystery that's real and not be making up a mystery.

CONAN: Let's get another caller in. This is Richard, Richard with us from Palo Alto.

RICHARD (Caller): Yeah, hi. About four years ago I was diagnosed with a very rare form of lymphoma called peripheral T-cell lymphoma. Multitude of reasons, I didn't pursue a lot of information or support. However, my wife, who was a medical professional, needed support. And she went on a lymphoma hotline and actually found a person who had the same disease up in Washington State and put me in touch with him. And I ended up spending, probably, three or four months' treatment corresponding with this person.

It was a tremendous source of comfort to know that somebody was experiencing the same thing I was. And, you know, I think it was invaluable, in spite of the fact that I didn't pursue it myself and probably would have fought it in a number of ways.

CONAN: How are you doing, Richard?

RICHARD: I'm four years and in remission. I'm doing really well.

CONAN: And how about your pal?

RICHARD: You know, I've lost contact with him. But he seemed to also be - he was in stage three. I was in pre-stage one so - but I believe that he also is recovered.

CONAN: Hmm. Well - and have you since found that there are people in -who've had this disease who communicate with each other?

RICHARD: You know, it's really interesting. It's really rare. And so it was difficult to find somebody who had a similar situation. Most of the lymphoma, I think, is B-cell. And then a small percentage of that is T-cell. And then an even smaller percentage of that is peripheral T-cell. So there's little research. There's treatment, but it's not agreed upon as to whether or not it's effective. And I'm actually uncertain as to what has gone on beyond my personal experience.

CONAN: Well, Richard, we're glad you're doing well.

RICHARD: As am I. Thank you.

(Soundbite of laughter)

CONAN: There you go. Here's an email we have from Chris in Castro Valley, California. When I was diagnosed with hepatitis C in 2007, I was terrified. I went online to find out more information and found several Websites with others who had gone through this already. Their support and encouragement meant so much to me at that time. They were able to give more detailed information about the process that they ran, what the liver biopsy would look like, what the different types of hepatitis C meant for my health and much, much more. I can't imagine what it would have been like to go through all that without the help of these wonderful people. They are life-long friends now.

And I suppose, these communities - well, sometimes we use that word loosely - but perhaps, not in this context.

Ms. FOX: It is amazing to see. We've seen it over and over and over in our research, not just in health but in other areas, that the Internet is turning out to be the perfect mechanism to get access, not only to information, but also to each other.

CONAN: We're talking with Susannah Fox, associate director of digital strategy for the Pew Internet and American Life Project. You're listening to TALK OF THE NATION from NPR News.

Let's go next to Paula, Paula with us from Portland.

PAULA (Caller): Hi, Neal. Thanks.

CONAN: Go ahead, please.

PAULA: Yeah. I had a different little bit different perspective. My daughter was diagnosed with autism. And we put her on a gluten-free diet after getting connected with other parents on the Internet. And we went to our doctor and wanted to get a blood draw. And we had a lot of push back from her about the fact that we heard of this on the Internet. And she said it would be unethical for her to order a test based on what parents learn off the Internet. So we went ahead and paid for it out-of-pocket so that she would feel bad about that. And then we just never saw her again.

But as it turned out, the test did show that she had a high anti-gliadin response to gluten. And we put her on that diet. She has been great. I saw that doctor, who did not want to talk to me, really, because I do think sometimes that they feel threatened by empowered parents.

CONAN: Did you find that, Susannah Fox, in your survey?

Ms. FOX: What we found is that people have two reactions when the doctor says, don't go online for health information. The first reaction, as the caller did, is change doctors. And the other - often, you can't change doctor because you live in a rural area or you go to a specialist. And so people go underground. They continue to go online and gather health information. But instead, the find a journal article that they can print out and bring to the doctor, or they just don't mention where they found the information.

CONAN: Hmm. And Paula, how is your daughter doing?

PAULA: Oh, she's doing great. We since found another diet that's helped her quite a lot, very difficult to maintain. But in terms of her gut(ph) function, it's just been dramatically improved. This information we never would have had from our doctor. I find leader to find everything from wart treatments with banana peels and anti-fungals with toenail things, all kinds of things that my daughter's wart fell off after a month, after putting a banana peel on it.

So I think there's all kinds of - you know, you have to be careful with information. But if there's no harm in trying something, why not.

CONAN: Banana peel seems pretty benign.

PAULA: Yeah. That's what I thought.

CONAN: Good luck...

PAULA: But she's doing great.

CONAN: Good luck, Paula.

PAULA: Thank you.

CONAN: Bye-bye. Let's see if we can go next to - this is Melissa, Melissa with us from East Lansing.

MELISSA (Caller): Hi. Thanks so much. My nephew is - was diagnosed with ALD, which is what the movie, the "Lorenzo Oil's" movie. Do you remember that one? I think it was back in the '90s.

CONAN: Sure.

MELISSA: But I think what's fascinating about, like, organizing these Internet groups, especially Facebook, is that it gives people the opportunity to, like, donate to research. And, like, my brother is, like, selling bracelets for his fund to research ALD. And, you know, you get the average Joe, who can chip in five bucks for a bracelet across the country, I think it's gives, like, people the chance to really make a difference in research, where they wouldn't have before the Internet said, hey, by the way, my nephew was diagnosed with this - please, help. You know, I think that's a really cool aspect about it.

CONAN: Hmm. It's interesting. We have this email from Betsy in Marquette. I just had a child born with a birth defect, and we knew ahead of time he would have it. This rare conditional, duodenal atresia, is so different in each patient that looking online for help and support only led to horror stories.

Ms. FOX: Yes.

CONAN: It was better to stay off the Internet and just use our doctors as resources. The doctors were amazing. He gave us all the information we needed. Our son had a successful surgery and is now doing well.

Good to hear that. But, you know, sometimes you have to understand the limitations. And it varies, I guess, from disease to disease or condition to condition.

Ms. FOX: And family to family, about whether you're going to choose to share things online or not.

CONAN: Melissa, thanks very much for the call.

MELISSA: Thank you.

CONAN: And Susannah Fox, thank you so much for your time today.

Ms. FOX: Thank you.

CONAN: Susannah Fox is the associate director of digital strategy for the Pew Internet and American Life Project, author of the Pew Internet Project survey on peer-to-peer health care, and was kind enough to join us here in Studio 3A.

Coming up next, some Libyan-Americans are having a tough time staying in touch with families and friends still in the country. We'll talk with two Libyan-Americans when we return. Stay with us.

I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

Copyright © 2011 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR’s programming is the audio.

Comments

 

Please keep your community civil. All comments must follow the NPR.org Community rules and terms of use, and will be moderated prior to posting. NPR reserves the right to use the comments we receive, in whole or in part, and to use the commenter's name and location, in any medium. See also the Terms of Use, Privacy Policy and Community FAQ.