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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Janice Janus - phaware® interview #135

Mar 9, 2018

Janice Janus is a pulmonary hypertension patient from New Kensington, Pennsylvania.  Janice co-created the facebook PH support group: Pulmonary Hypertension Awareness and Support, because she felt the need to have a better connection to those dealing and adjusting to their “New Normal.” In this episode, she discusses her experience in participating in clinical trials and why raising awareness is so important for this rare disease.

I am Janice Janus, I am actually fifth generation pulmonary hypertension hereditary. My great grandmother, my grandfather, my aunt, and my mom, all had it before I was diagnosed in 2012. Back then, 1957, 1958, 1985, they had no medication. Unfortunately my aunt to go through the double lung and heart transplant in 2012. I was diagnosed and I ended up going on oral medication for that. Then in 2014 there was another study that had come out, and it was an oral medication, and they had asked if I wanted to partake in these drug study for that, to go and see if it would help to improve quality of life. I actually did go on that study as well.

There's a lot of pros and cons whenever it comes to dealing with setting yourself up for becoming a trial patient. You have to weigh the pros and cons heavily, because some patients are sicker than others. Some of their condition is worse than what others are. With mine, I really didn't have all of the same aspects of other patients, where they had a lot of swelling, or they have another illness. I have no other illness besides pulmonary hypertension. Going and looking at a trial, I thought that was the easiest way for me to go and say, "Yes," to go and get more things done, because I didn't have anything else hindering my condition. Of course, I was going to go and say, "Yeah, I'm all for it, I'm gung ho, because if it's going to work for me, it could possibly work for somebody else if they're even worse than what I am."

It's eye opening because way back then, like I said, there was no medication. To go from zero medication, to one medication, now to 14, it gives you a sense of accomplishment. It makes you feel that even though you're sick, you're still able to accomplish something that's viable for others that are going through what you're going through. If it weren't for people going through all the trials, and willing to use their body for science, we wouldn't have all the medications out there that we have today. To sit there and say, "No," is sort of like telling the whole world, "No, I'm not willing to go and help you with a cure for our own disease." If your body is able to go and help with that scientific study, do it, because it's only going to help thousands of others in the long run. It's also going to help you, there's things that I didn't realize when I was first diagnosed, that I wasn't able to do, verses being on all the medications that I'm on now, that I actually feel three times better than what I was when I was diagnosed.

Even if you're afraid, talk to the doctors about it. Let them know what your concerns are. Have them give you a different ratio of what the pro and the cons are. I'm here for support, and I'm here to go and try and bring out as much awareness to this disease as I can possibly go and do. I want a place to where we can go and not only show our support to other patients like ourselves, but share that awareness, and where we can go, what we can do to go and bring the awareness even further than just sitting there bickering back and forth with one another.

Tiffany Gunderman and myself created the Pulmonary Hypertension Awareness and Support group here on Facebook. It is open to anybody from a patient, to a caregiver, to a friend, who is willing to go and be supportive. I try to bring out all of the topics of the studies that are taking place, like the conferences, and everything. You do your podcasts and stuff on there so that we can try to go and make big huge family out of it. We try to go and give as much support as we possibly can by doing our research and our homework, and being able to go and give our own advice, because of what we've been dealing with, but it's not medical advice. I think it opens up their eyes a little bit more, because everybody knows what we're all going through, and they can all openly talk about it.

Tiffany and I decided to go ahead and get that started. When we first started out, we only had a total of 15 people that started coming over. Then they started adding, and adding, and adding. It's going to be five years this June. We have close to 2,300 people. Yeah, I can actually say I feel really good about being able to be there for everybody, and help when I need to have the help, and direct them in the right area to where they need to go if we can't give them sound advice. I mean, we can't tell them, "Oh well yeah, here, you need to go try this med, or you need to try this med," because we're not doctors. All we can say is what our experiences are. I really like that because it's sort of like how my little slogan is on there, "Where strangers become PHriends, PHriends become PHamily."

The one key thing that I go and I try to tell everybody who is new, or who is there to support a family member, or their child even, is to don't give up hope. The one thing that we want to do is let them know that there is hope, because all of the medications that are out there, something will be able to assist. It may not be what they're looking for right off the bat, because we know that medicine is not a miracle worker, but you have to work with. There is hope, there is a lot of places that we can go to get the support that we need as far as doctors are. That we're all here to lend a helping ear and a shoulder.

My name is Janice Janus and I'm aware that I'm rare.

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