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Hemophilia Foundation of Oregon 061415

Jun 9, 2015|

AN INTERVIEW WITH MADONNA MCGUIRE SMITH, EXECUTIVE DIRECTOR WITH THE HEMOPHILIA FOUNDaTION OF OREGON, ABOUT BLEEDING DISORDERS, THE CAUSES, THE WORK HFO DOES, AND ABOUT THEIR BENEFIT WALK ON JUNE 27.

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Automatically Generated Transcript (may not be 100% accurate)

This is microscope and Entercom radio Portland public affairs program. My name's Gary blossom and this time on the show we're going to be talking about bleeding disorders and the hemophilia foundation of or against a primarily volunteer run nonprofit organization. And I like to welcome Madonna McGwire Smith executive director of the hemophilia foundation Lori into microscopes for the Madonna. Good morning so tell us a little bit about yourself and your organization. Well I'm our organizations have been around for about fifty some years it was formed in 1963. And it actually. Supports family is deliberately disorders throughout all of Oregon and the counties of southwest Washington. And I have had the privilege of working with and I hit within the traditional Oregon. Found for about two and a half years now on the first two years I would see development director and did it just our fundraising and everything to do fundraising. And as January 1 this year to cover executive director when our previous executive director retired. So I had the privilege of being a fan organizations don't have fears. Well that's awesome. So tell me what tennis appears duke. Well we have a preview these guys really do several of them for months for people throughout the fade after Oregon and Washington. We. Typically in a month we'll have some sort of family event probably in a support group. I'm we have sports groups in Medford and Eugene and in the Portland area. And they were often have an educational speaker that will talk about. Managing the brain disorder. And hopefully you know talking about healthy families and working families in general. How much else to do a lot of things that relate to. Couples and parents managing kids that grow up quickly disorders it's very. I'm stressful and definitely financially challenging affiliate offers good support that they can and that respect. Well I had a group that I called blood brotherhood ticket together with a bunch of guys very effective with pedophilia. And they do lots of fun things like can come to endorse skydiving. Town. Facility up from Washington State they've done camping and cabin than just a variety of things on nutrition and exercise. Didn't and I think the most important thing we do is we have camp Kelly has. To panic I had an 82 hits each year and teach them. How to infused or treat their bleeding disorder and it's a weeklong. Campus takes place. And camps happily go near falls city Oregon. Takes place the first week of August this year. OK so you probably sending kids up for camper now we are what I get up like crazy for. Good. So maybe we need little foundation about bleeding disorders can you tell us so there's a variety of bleeding disorders are correct. Absolutely it's humorous to become well known ones are. He moved Helio which is broken into two groups AMD. Hemophilia a means that you're missing the protein is clotting factor. Called factor eight. And hemophilia B is you're missing the kind factor factor nine. I'm essentially one and an injury occurred and the body tries to stop. They're rushing out of blood. There are holes here are the factors that have to fall into place a bunch of proteins that have to be it Tom. Sort of spark and put into place and two of them one of them is missing if you have hemophilia day and a different one affecting you can't pedophilia be. So you affiliates probably the most common adopt those you know that the blue bloods. To be is. That I Nicholas the sun is the first. To. Have been known to have it. And that's sort of where it did Qaeda spread throughout the world through a lot of them royalty. And we have found some of the magazines such as the second most common ones. Found it actually has been as much as one to 2% of the population. A lot of people don't know they have it it tends to be more mild but not always. And essentially you're missing a pro team as well but it's different kind of team. If everyone platelets are sticky. And that's what makes the blood clots and I only have an injury and when you have all of us that these you don't have any stickiness from outside your platelets. So the bleeding doesn't stop for that reason. So I'm definitely not common but there's also a lot of different kinds of pedophilia. Play with the functions. And other. Some issues related to me personally represent all people with sleep disorders. Our most bleeding disorders hereditary. And they've passed down through the families are. Yes they are in fact down here Celia. Is and DX come down and there's patch on the monitors I'm evidence the fan has any daughters there automatically pastime. But as much as a third of the cases of hemophilia are Al mutated. In the child or in the mother and pastimes so it's. There's sort of spontaneous and not genetically passed on three for 30% about and that's a big chunk do you think of almost a third. Intact their lot of people within our foundation membership there are comes spontaneous mutations and not hereditary. Eye on him feeling. And now what about diseases also hereditary it's on the top scorer with sound. And it's a pretty. Dominant. Comment on apparently because a lot of cameras from they have all of us that there is a for the family they tend to have more than one child like that. I in my case my husband has. Followed up with it and our three children have it as well well. Yes so. Found but again they're about the spontaneous mutation within Talabani has seen so there could be as much as the third of the cases. Also through genetic mutations. Certainly sounds like kind of a guessing game who. It is this is a very exactly right for all over the map calculator and a little bit easier to diagnosed it's typically diagnosed a berth in the mail. It's circumcision has often the point at which. They determined that says that the little guy has can't feel it but and I won't magazines. It's an average of sixteen years to get the diagnosis. Well I'm they don't know that much about it if in Newark. Down diagnosed disease although it's almost a hundred years since they've diagnosed at the first time this town nineteen point six. So it's just not Bennett street surged until more recently. They've got its name in the 1980s and found since and that's definitely. Become one of the more well known diseases and I'm actually about a larger percentage of the population and he was feeling and. So what is life like for a person with a bleeding disorder. Well if you have hemophilia of that and the you can actually treats on a regular basis so they cheap prophylactically and two to three times a week. They can. A lot of kids that gentleman that have had chemistry on a Monday and Thursday and they're like it's just as if you don't have a brain disorders. So they replace what's missing. Enjoyed. Product that is made from. I himself and hamster so it's not human based sell so it's very safe they can use that as often as necessary if they have to believe that they can treat more often and that's. And so it's it's rare that you even know that someone has him feel him that they share with you got nearly as obvious as it used to be. Developed by the vision not quite the same yes it's a more complicated molecules and how much more difficult to create. Well the color recombinant or non humans based self. And so it sounds Alabama's needed more of an on demand so if the child is injured or that. The person with all others injured or if it's a woman and she's experiencing heavy menstrual cycle. And it's pretty much on the mantle as needed because it's treated with human plasma based. Product so it but a bit more potential for danger. Of passing on an unknown blood borne disease. Can we say most people and maybe you don't even know the committee has hemophilia or any sort of bleeding disorder for the most part so what is the biggest misconception about a bleeding disorder. The biggest misconception is that you're gonna die from paper cut I could really okay. So I actually because we've done such a good job with our medications and are treatments. A lot of times. Individuals with a plea in federal trade before they go to work or go to school in the morning and then have a very normal day. So many of their friends. And colleagues won't even know that they have it. And that's that's actually what our goal as we want people who live normal healthy whatever you call normal healthy happy lives. And we don't want it to dictates. So in arcades with my kids. We do our best to. Have them participate in as many things as they can you know be kicked via physical activity possible. And then shared they have a twisted ankle are a broken arm or whatever that's when it becomes more complicated. But on a regular basis she wouldn't even know that my kids heavily disorder. It's there where medical are great but the maybe he'll read and or whatever but that would be the only reason you might now. If we choose this year. And so I read it's kind of sounds like internal bleeding is more of a problem then the middle like a paper cut. Absolutely internal bleeding can happen in the joints. And the joints that's where it's not dangerous I am possibly can be also dangerous and we will look out for our own any sort of filing or are briefing. Sort of and a must for us to a strong buffalo area. Like for example your five separate five can be pretty dangerous that the most dangerous really is. Joints and mucus membranes so. Dental work can be caught a lot of bleeding. Gastrointestinal bleeding can be incredibly dangerous. And then of course women with their monthly cycles can also be. I had pictured like hemorrhaging and be incredibly dangerous. So therefore I they have found really are jointly my kids. They run sports and they do Irish dance and as a result we end up with a lot of ankle issues and the comparative that when you have a bleed to remain active in an ad joy it's. I'm calcium buildup and as a may have early onset. I feel present arthritis filler. You know things that go along and what Foley would normally consider aging happens much earlier with people with sleep disorders. Is there any sort of spontaneous bleeding there's a mostly from injuries. There is spontaneous bleeding absolutely. It's hard to know though because if I twist my ankle I don't have it but if I took playing golf I can get a torn ankle and I know it's a result twist my ankle. But I just. Tweaked my call and I don't get any swelling and I never even know that I had an injury. So that complication is is it really an injury they weren't aware of or is it a spontaneously and that's the hardest thing to sort of determined and gentlemen let's with hemophilia often have all the cop spontaneously. What my kids of these heavy. Felt telly every time now I didn't have I felt I guess is that's. Some are sure. It's not that the kids will be kids right. That's right so what is it like for a parent with children. With the blue bleeding disorders. Well you live your whole life worry this. I think that's the Beverly. One I would think mostly I I tried could be. And my husband as well we've taken. Sort of an impression that we're not going to overreact. When there's an injury or just going to. Have our kids who live. As normal kids life that they possibly can't. Although we haven't we're not gonna let him do football or hockey or anything like that. But we certainly. We certainly live on a little bit more of an edge then some villages just because. Any injury can be more dangerous for us and there is the other big challenge is sending our kids done overnight or trips away. That they get a little bit older. Because should anything happen. There wouldn't be anyone typically it would have been anyone with some trains. To refute them and to treat you actually have to get evade with a needle. And push a blood products through butterflies to be into the arms so it it's not an easy take Appel or. Do you like except Japan shot it's actually a full line. Get access to a vein and and put in a reconstituted by product. So unfortunately it means sometimes have to miss out on things and my son is a thirteen and he was hoping to go. I'm that age. School trip to pester Rica. Next spring but it would be too remote to. And too difficult should anything happen to him to get him to. Medical care. In a timely manner so they've decided with the school district and not let him attend unfortunately. And I happen occasionally do. And it's stressful on everyone and can you really want your kid to be just like everyone else. And unfortunately sometimes. But the consolation if I get to go on the Washington DC trip with his pick great groups so. Just look at the chip just. My country. DC you'll be just as well that's right so there won't turn edit all the way we can make him seem as as normal as possible. Right so the treatment didn't do your children treat themselves certain but do you remember assuming you have to help out at some point. I do we held up quite a bit but the really great thing evict camps found that in our biggest focus by the end of the week. Kids should tell us confidant possible doing it on around facility especially when they hit by age ten or so we're hoping that they've gotten what we call the big stick awards. And the big stick award is when you can. Describe your brain disorder talk about your treatments. How much you need in blood products for treatment. When you would treat and then be able to treat yourself. Put the needle in your arm yourself. And except Microsoft has pushed it to the tip. So I'm excited as head of both of my children last year of the two youngest son my ten year old and twelve year old are now eleven and thirteen. Both got their big step toward a camp last year survey of pass the test. It looks fantastic event shall. A closer look at the big accomplishment for young kid. It hit it and what do you think about it ten years old that's that's tough to do I mean I'm in I'm much older than I have a hard time thing about sticking a needle in my arms. So it's very impressive this kid Verne at a very young age how to take care of themselves and it's really awesome to watch. Now how do you how bleeding disorders can diagnose you said a lot of it is with them Abreu after childbirth and in circumcision is a great. That's correct for boys took offense. Right away and circumcision. Don't believe him lead him later in the the doctoral. You know that eventually you refer them to him apologists and then the diagnosis would take place. Sometimes though it doesn't happen until there are a little bit older and they have. Breathing all of their legs and arms are and strange places sometimes unfortunately cameras get turned him for abuse because. It appears that the family is. Hurting that child when in reality the child of the brain disorders the versions appear. Fair and angrier I guess for the for the for the fans and others. And it can be in places that. Wouldn't necessarily be. Way available we would see when you fall on your knees trying to Alba. It can be an on your biceps during your back car. I'm on your cage and places that would appear to be more domestic violence rather than. I believe its orders they sometimes it leads to that and the and they young child's life. And then in our case. My son was actually urinating blood and earlier put in the hospital. It was one of the things so that's wrong with him and I eventually they discover that it was followed on his knees and then from that. Directly telling members to have when diagnosed with it so. An optional take you know like one sort of case and then from there they can deterrence it's families throughout habits. Now forget it may be a lot of the young girl. When they hit puberty will be a first time that don't experience any issues. And that's why they can't take steps to sixteen years and generally for. I'm power that they can be and thank men who could. So girl could potentially go back and forth with her gynecologists. For years to push you would actually get the diagnosis. Are there tests that can be done. There aren't they call them well I think it's simple clotting. Panel. Here pediatricians can do that general practitioners can do it and it's basically just testing. How long it takes for your blood to clot. So there's some of them relatively simple tests they can be done to for the doctor's office. Trouble followed oddities and you're feeling and and the reality. Drilled down into the numbers they hemophilia center at LA tissue is really the place I would suggest anyone who even a films are gases they might have. Probably just sort of that's the best place to go to because that you Italian fare expert and specifically the person they're very good about diagnosing and care and treatment. The kept talking today with Madonna where Smith executive director of the hemophilia foundation Morgan. And what's on the horizon for bleeding disorders what's new feed. Actually it's really exciting time there's a lot of new products coming out to come there's some actually in Asia decades. Changed the whole way. Treatment for. For brain disorders there's they're testing. Ford like type one diabetes I have people have to get them children different shots. We call them have to take shots just so Q and it's really not getting a day and it's just just below the surface so this scan and but actually they're testing are very similar. Treatments for hemophilia and Japan right now so we're kind of hoping that that works out. And eventually hit the market it would certainly have a lot of time a lot of we have treatment training and all. Don't think a lot less that treating him leave the first I would change the whole face it. Found it also within the United States there's a lot of jet companies that are coming out lists ten nominal products. One much recently came out with so long lasting factors that now people with hemophilia B or factor nine deficiency. Actually can infuse once every ten days to two weeks. So they prolonged. The length of time that you sustain. Protection minding your your bloodstream which is exciting and off from tennis here. Treaty really so there's a lot of great improvements. A lottery search. It's just looking very positive for the cleanest tour. So licks are exciting times on the way. Yeah yeah the cats and if Obama about movies which I know we don't have with the base. Human plasma so eventually a product. They found some other. Animal or from outside. Town itself. Which makes it safer for our treatment. And a manicure hopefully in the horn in the very near future. However they opera belly hemophilia foundation Oregon also has an event coming up you tell us about sure you're walking your fundraiser on the way. Yeah show on June 27 do we have. Run for our lives for bloody round which took a five mile race that takes place at the determining center in now Beaverton as part of that quality health. Recreation complex. And is. It's for anyone who wants to run five miles depending on other brain disorder we encourage any runner and then just steady run off through the little. Have to have interpreting senator. And that starts with registration at 7 AM on June claims seventh and the race to begin at eight. And it took twice I don't registration fee and you can actually paid day upgrade if you'd like to. Or you can go on active dot com were listed as well. And register in advance. And then at 9 o'clock we start with the registration for our walk which we hope to have around 400 people attending if not more. And they will be sort of carnival atmosphere we have gained a lot of this to have some blow ups they have some basketball games and other things sponsorship group and and there's some gift baskets you can land they'll be is that try to Portland releasing him National Anthem for an feathers. A lot of excitement going to be going on and at 10 AM and we're gonna go on a short. 2.5 kilometer walk around the turn things senator. And found top American people that's going to be providing free pizza there doughnuts and perhaps. Columbia gorge where do you fit well and a lot of things from places like. Triggered shows that Starbucks and others for the big treat certain spots fun. He says that June 27. That's right and our goal is straight through 2000 and last I check clears somewhere in the mid thirties thousands of a couple of ways to go. So well more happy to take on donations if anyone's interest since. These are going to be lots of the information they're available for people who maybe just once more information. After they've information Napoli in the first of the information about activity they were doing women with Lyndon ferns and if I hold this freak attack at a map out kind of questions. And potentially attend an event in the fall that we have for women with clean the first of those. They're fifth it'll be a plate full of information a lot of companies will be there representing around product itself. A lot of questions. And just tells them Tariq. Can talk a little bit more about summer camp to that so that's also on the way. So yes summer camp picked plays August 1. As well the training begins for the fast and August 2 day is today that. All of our campers arrived. Campers come from all over the states and it ages seven through fifteen you have to be done my first grade in order to build to attend. And then when you turn sixteen and seventeen you can also serve as a counselor in training. I'm taking a couple more years and be more or leadership brawl. We. We split it up in the cab and everyone gets some sort of a camp maim and all weeklong it's just fun a lot of sun but a lot of water and all about learning to treat yourself. That's great go what they were great environment to be able to do that gives you end and well away for kids to kind of feel less alone. Absolutely. Absolutely and he really it's amazing it's like the kids have never even separated so like clash and they went to camp and when they show up at camp this year it'll be like. Take separately or together they've all been such good friends. So that's it's really exciting week it's a lot of fun and I'm by the passing a home that tie where the. That's the hook but just like a good summer camps should be used to be tired and I can't. They do all the things that I would never let them do it how would hope let's go back up and you mom doesn't need to know them right back. So somebody wanted to get more information about organization work and they got. Well we have a web site to it's hemophilia or again dot org and how America home there's our fundraising are locked in a runner both without merit. Well can have. Bunch fire events and then there's some links to like the national hemophilia foundation. They would say federation of America and other places that have found more specific information about sleep disorders. So I he material word and not work. Great so there is lots of information up there. Absolutely and that's I have a good foundation has a lot of great information specifically about. Probably disorders and NAFTA talk about theft relating what's that all about growing up what can America what I expected each stage of how. Parents can prepare kids for school and actually prepare schools for the can conceptualize things that are offered through both of them sort of thing. Crable thank you so much for helping us understand bleeding disorders today. They're a lot of thank you had a yeah I was thoroughly enjoyed it when Donna McGuire Smith executive director with hemophilia foundation for you and thanks again thank you. Mitchell's goal was an Entercom communications and public affairs program. My name's Gary and if you have a nonprofit or public affairs organization that you'd like little there's no doubt you can email me at microscopes @entercom.com. Remember intercom starts with a neat. Four you can go directly to the station's website click on the community link and submit your information there. Also we like to hear this program again you can visit our podcast page at microscope PDX dot com. Thanks for listening to match a scope and enjoy your weekend.