Tad Rockwell explains why HAE patients should never settle for “acceptable” symptoms and how trading up for better medical care can help them reclaim their lives.
Transcript
When you start working with people that are scientists, they’re looking at the numbers, and they forget that there’s a life and a human story behind it.
And it’s useful for them to be reminded because, for the most part, healthcare professionals get into the business of helping people because they’re passionate about it. They want to help people, and the science becomes a mechanism to do that.
And so I remember walking along the Camino [de Santiago] in Spain to raise awareness for HAE and talking to researchers, and they’re like, “But Tad, wouldn’t, like, going from, like, two attacks a week, 52 weeks a year, down to 12 attacks. Wouldn’t that be acceptable?”
And I’m like — “Let’s just, let’s just walk through this. An average attack is two to four days, so let’s just call it three days. So you have 12 attacks a year that incapacitate you for three days at a time.
“That’s 36 days. That’s all your vacation time. That’s all your sick time. That’s also additional time off of work. So how is a person having 12 attacks a year supposed to hold down a normal job, right? Like, how are they supposed to do that? And a percentage of those times you’re going to end up in the hospital or in the ICU.”
So they’re like, “Well, what is, what is acceptable then?” And I’m like, “I don’t know. Why don’t we try for none? Right. 12 is better than 52. But why don’t we try for 1 or 2 or none would be better.”
And once I kind of helped illustrate that to those doctors and those researchers, you know, they really got into high gear. A lot of people that have rare disease and that have it thick through their families develop this condition where they’re like, they think that this is just their plot in life. This is, this is just destiny for them. And I think that that’s a bunch of garbage.
If you take action and you start fighting for yourself, if you live in the United States especially, but a lot of countries in the world, you can get a modern treatment for this rare disease, and it can change your life and you can live whatever life you, you want to pursue. You can be a normal person.
If you’re looking for care and you’re looking to not be a victim of your disease anymore, then you have to pursue the highest level of medical treatment and specialists that you have access to, and probably some that you don’t believe you have access to.
So I have a saying when people are like, “Yeah, I’m just not quite getting there with my doctor.” I’m like — “Trade up, trade up, go to the Mayo Clinic, find out where your specialty, the top level research in the world, is going and reach out to them for help.”
No asky, no getty.
And if your life is not worth it, then whose is? Right? So get the best level of medical care.
I am very much an expert, so even with my team of doctors that I have right now, one of the things I demand from them is their cell phone number. And I demand that, like, when I text them, they reply, and I don’t abuse it. But when I text them in that moment, I want them on it or I want them to delegate it to somebody else who’s on it. That’s the level of care that I demand.
Now, my rare disease today is completely under control because I have a plan A, I have a plan B, I have a plan C, and I have a plan D that are all well thought out, that I had a team of people help me come up with, and I have people test it, right, like, “Hey Tad, your, your thinking is off here. You need to be thinking about this and this and this and this and this.” Then I’ll integrate it into my plan.
So even though my disease is under control, if something bad happens, if things fail, I have a backup plan and I have a backup plan to that, and I have a backup plan to that. So best medical care and prior planning. Sometimes it’s hard to get there mentally, but that’s what you want to get to.
