How my distrust of modern western medicine changed

Lately, I’ve been hearing about and reading a lot of personal stories as to why folks refuse to get a COVID-19 vaccine. They have a distrust of western medicine, the government and the pharmaceutical industry. They feel like the vaccine was rushed through to get it on the “market.” They don’t trust the the truth of what the side effects are. They think that western medicine is just a bunch of untested or poisonous chemicals that someone has whipped up to placate the masses. Maybe they think the vaccines are just another way that the government has control over our bodies. So many reasons…I’m sure you’ve heard even more.

I understand the mistrust. Being born in 1960 and diagnosed as a toddler with “Vitamin D-resistant Rickets,” I was basically a guinea pig for doctors who really didn’t understand this rare genetic disease and know how to treat it. I wore leg braces as a way to force my legs into a straighter shape while taking massive doses of Vitamin D and maybe some kind of “preparation” (as my mother called it) that might have contained phosphorus. The orthopedist used x-rays of my legs to “prove” that the meds were working and I was growing properly. I was encouraged (read: expected) to practice walking so that I could “walk properly, like a young lady is supposed to walk.” I never reached a “normal” height. My legs never did “straighten up.”

The truth is, none of these doctors had the slightest clue as to what caused my rare phosphorus-wasting bone disease. But they did the best they could with the knowledge they had at the time to help me “overcome” it, not really understanding that there is no cure for it and it’s a disease that lasts a lifetime.

Fast forward several decades and we now know the cause and even which gene the mutation is on that causes this disease. We don’t have a cure, but we have a treatment that is especially effective for children, so that they (hopefully, if properly diagnosed early enough) can grow to a more “normal” height, with straighter legs, fewer dental problems, less bone pain, fewer insufficiency fractures, fewer surgeries, hopefully less hearing loss and overall, less damage to the bones and joints as they age. (The enthesopathy is real!) Another side benefit? Less emotional trauma when you’re growing up, less depression and higher self esteem because let’s face it…a child who “walks funny” or has trouble in PE classes and is much shorter than their classmates faces almost daily rejection, stares from others and sometimes outright discrimination.

Frankly, my feelings about Western medicine have changed from “great distrust and disappointment“ to “amazement.”

Why? I was part of the clinical drug trial, Phase 3, for Crysvita/Burosumab, the current best treatment for children and adults with X-linked Hypophosphatemia. This drug received approval from the FDA in 2018, two years into the trial I was in. I continued a third year and now I’m in the 10-year follow up trial to monitor its effects on me. Approximately 120 people WORLDWIDE were in this phase 3 trial. There was a phase 1 and a phase 2 for the trial, with similar numbers of people in those.

You know, you can only test rats for so long before you have to find out if a drug works on people. People have to volunteer* to be “guinea pigs” to find out if the drug is effective. I can say without a doubt that this drug IS helping children significantly and it is also helping adults (less significantly, in my opinion, due to the fact that by the time we get to adulthood, this disease has already done a lot of irreparable damage.) The Phase 3 drug trial I did for burosumab was the second drug trial I had participated in for XLH. The other drug trial was at Yale and with a smaller group of people, I think. Phase 3 is the final phase which can lead to approval by the FDA.

Basically, several dozen people WORLDWIDE helped to get Crysvita approved and available, which took several years. That’s not very many people but again, in the U.S. alone, there are only somewhere between 13,332 and 16,665 people who have XLH.** The pharmaceutical company had to rely on the testing of relatively few people to get this drug approved for a small group of rare individuals. But believe me, their testing was very rigorous!

So, what about these COVID-19 vaccines? According to my research on the Pfizer, Moderna and Johnson & Johnson websites, a total of 114,990 people participated in the Phase 3 trials for their vaccines. (Compare that with 120 people worldwide in my phase 3 trial for Crysvita.) Let that sink in. There were 114,990 who decided it was worth the risk of unknown side effects to find a vaccine for COVID-19 to help YOU, to help ME, survive this highly transmissible and potentially deadly disease. Those participants took the risk of being a “guinea pig” of the vaccine so that we could basically stay out of the hospital, should we contract COVID-19.

I’d like to give a shout out to those 114,990 people. 👏🏼👏🏾👏🏻👏🏿👏🏽 THANK YOU!

In the U. S. A., “we the people” (from our constitution) means “WE are the government.” 

Well, “WE” are also the pharmaceutical “industry” and the FDA and the medical “industry.” We who volunteer* to be in drug trials so that we can help our community are the ones that you insult or disparage when you refuse to take the vaccine because “the government put a tracking device in it” or “we don’t really know the true side effects” or “if I take it, that means I have no faith in God.” Really? You think that little of us? You question our faith, question our ability to report side effects, question our common sense and think we’re gullible?

That hurts. We who participate in clinical drug trials thought we were helping people, our families, our communities, our friends when we put our safety on the line for OUR COLLECTIVE HEALTH.

It’s sad that there is such a distrust in not only the government and the medical and pharmaceutical “industries” but also in WE THE PEOPLE (your neighbors, your friends, your family) who help get all sorts of drugs approved for you. I was in drug trials because I hoped beyond hope that my test drug, if approved, would help children not to have the same experience I had and have as a person with XLH. I like to think that the 114,990 people who participated in the drug trials for the COVID-19 vaccine also did it for others…the elderly, the people with chronic diseases, the people with poor immune systems, the people who can’t afford to miss work, the healthy people who thought they were invulnerable, the children, the medical people who are overwhelmed with caring for COVID-19 patients. 

Modern western medicine isn’t perfect. Neither is my immune system, which has failed me many times. We do have to be proactive in caring for ourselves, not taxing our immune system, but building it up so that we have the best tools for combating disease. The vaccine is another tool to help with that. It’s not 100% effective in keeping you well, but it’s over 90% effective in keeping you out of the hospital. I’m all for that. I have enough medical bills as it is and don’t need more. I’ll continue to eat well, exercise, take some supplements, wear a mask, wash my hands but also with the added tool in my arsenal of COVID-19 fighting tools…

The COVID-19 vaccine.

*Volunteering in clinical drug trials often includes some types of monetary compensation for your transportation, possible overnight stays and some of your time. It’s no way to make a living but there is usually some financial compensation so that you don’t personally incur any expenses that aren’t reimbursed.

**It is estimated that one in 20,000 to 25,000 births are people with XLH. As of today, the U.S. population is 333,294,290. That is how I arrived at the approximate number of people with XLH in the U.S.

Copyright 2021 S.G. Hunter and Banjogrrldiaries

Check-in

I see it’s been 6 months since I last blogged. Too many thoughts to write down, I think. And here we are, still in a pandemic. Are there any XLH-ers reading this? How are you doing in the midst of the pandemic?

I’ve had some pretty big days recently. Quarantining has not been a problem for me most days. I think I’ve thrived. A couple weeks ago, though, I had a telemed visit with my family physician. So, I showered, blow-dried (blew-dried?) my hair, put on a clean, unwrinkled shirt and showed up for my appointment on time, in the comfort of my own home. The following week, I had another telemed visit, did the same thing except put on a different colored shirt this time. All went well.

THEN, last week was huge. I had to go see an orthopedist about a new problem. This was an in-person visit, too. So, I showered, blow-dried my hair, put on a clean unwrinkled shirt AND, get this, applied deodorant, brushed my teeth and put on pants and shoes. It was exhausting. I forgot how long it takes for me to go anywhere. I’m just glad I remembered how to drive. And could find my wallet. And keys. And mask.

But here’s the thing that was really memorable about my visit to the orthopedic clinic. I waltzed through the front door…well, not really waltzed, more like a slow, rickety amble, got my check-in ticket, sat down, checked in, sat down again, got called back, sat down again, saw the nurse, then the doctor, got sent to x-rays, sat down again…and here’s where it got interesting. Two folks (young married couple) came into the x-ray waiting room UNMASKED. There are signs ALL OVER that clinic about the mask requirement and here were 2 people, UNMASKED, in the small waiting room. Hello? Anybody paying attention to this?

Please note: COSTCO is now more strict with its mask policy than my orthopedic clinic run by a major hospital that has an infectious disease expert that has been interviewed on our local news almost EVERY DAY since mid-March. Costco now says that if you have some medical condition that prevents you from wearing a cloth face covering, then you are required to wear a plastic shield instead. No mask or shield, no entry. 

But my orthopedic clinic? Come on in unmasked, the air is fine. Well, fine for you, but maybe not for me.

WHAT? 

Dear Costco- I need a new orthopedic clinic. Please consider opening one up in your store. 

After my appointment was over (with a few more “sit downs and waiting”), I walked towards the exit/entrance and noticed a table with 2 women sitting in the entranceway, checking temperatures. They weren’t even there went I entered the building an hour earlier. Um…wonder if they were there when the un-masked couple entered earlier?

Most of my medical people send me an email survey to rate my experience before I can even get home from my appointment. Not this place. No survey, no care summary, no nothing. So now, it’s going to require extra effort to complain about their low standards. What a trip.

I can only shake my head. Best of health to my little community of readers out there. Take care and WEAR YOUR MASK. You don’t need this COVID-19.

Happy Thanksgiving!

2 pumpkins, 2 felted pumpkins, 1 felted squash, 2 wood carved pumpkin figures by me. Well, except for the real pumpkins.

Copyright 2020, Banjogrrldiaries and S. G. Hunter

The De-evolution of Civilization

As a person born with a genetic bone disease, x-linked hypophosphatemia, I have been thinking a lot about the COVID-19 pandemic and so have many of my fellow XLH-ers. Are we at a higher risk because of our disease or do our drug treatments compromise our immune systems? The doctors are saying, “No… folks with XLH are no more likely to get COVID-19 or suffer severe consequences if they do get it.”

I don’t disagree with them but my response is, “I don’t need the trouble.” Having XLH already complicates our lives enough so honestly, I don’t want to even catch a cold, let alone the flu or COVID-19. Do I want additional body aches? Um, no.

People’s responses to the pandemic have been fascinating, too. We can shelter in place and protect ourselves and others to “flatten the curve” or we can go out in the world, catch it, leading to “herd immunity” (unless you’re one of the unfortunate ones who die from it, you know, survival of the fittest and all), etc. We can wear a mask or not wear a mask.

We can go to a house of worship online or in our cars or by God, we can go in person and sit close together because no one is going to trample on MY rights to go to church. (And that last thing I find really funny because I have actually “gone to” more church (online, of course) since this all started in March than I had gone to in the last 6 months. And I’ve even gone to a variety of services online, not just one denomination. It’s felt like I’ve had an “all-you-can-eat” buffet of church services in the last 2 months. I don’t understand the complainers who feel like their religious freedoms are being taken away. We’ve actually had MORE.)

The conversations with my mother about this pandemic have also been interesting and have lead me to read some about the history of polio. My mother, who is 83 years old, remembers when she was a little girl not getting to go to the lake with her brothers because of polio outbreaks. I did a little research on that. Polio was considered a “summer disease.” Public pools would close, camps would close, in order to keep it from spreading. Children were the most vulnerable, as you may already know. And to quote an article from NPR in 2012 about polio in the United States, “In 1952 alone, nearly 60,000 children were infected with the virus; thousands were paralyzed, and more than 3,000 died. Hospitals set up special units with iron lung machines to keep polio victims alive. Rich kids as well as poor were left paralyzed.” Franklin D. Roosevelt, who contracted polio as an adult, founded the March Of Dimes in 1938, primarily to combat polio. (A side note: As an XLH patient in the early 1960’s, I was helped by the March of Dimes.)

Interestingly enough, not very many people were infected or died from polio. The first major outbreak in the U. S. A. was in 1894, so the disease wasn’t new. And if they got it and lived, they might “only” be paralyzed. Why did people get so whipped up about it? They could have waited for “herd immunity.” Instead, scientists got to work on finding a VACCINE. People kept their children home and away from public places in the summer, since polio seemed to rear its ugly head then.

I have watched with fascination the protests going on in my state (NC) and others of people marching to their state capitols to protest all the restrictions (business closures, mask wearing, social/physical distancing, etc.). I have wondered how we got to this point in our country from 1950 to 2020. In 1950, people were willing to be inconvenienced in order to keep their community’s children safe from polio. In 2020, Americans will not tolerate being inconvenienced.

Now, I am not trying to simplify all this because it IS complicated. Number one, people will do about anything for their children. If COVID-19 affected only children, similar to polio affecting primarily children, then people now in 2020 would go overboard with protecting their babies. Mask wearing, hand washing, social/physical distancing, cancellation of schools and church would be, OF COURSE, the thing we would do without question. Children are valuable.

BUT, COVID-19 primarily affects (and kills) old people and, well, MeMaw lived a good life and it’s unfortunate, but it was almost her time to go anyway and the government could sure use that social security money she won’t be needing anymore. Of course no one is saying this out loud, but they’re sure living like it’s true. “Forget these restrictions, let’s go see Grandma.” And Grandma isn’t going to say no, because, well, she grew up in a generation where women never said no because that’s impolite and well, she misses her grandkids.

And of course, we do need our society working because there are bills to pay and rich landlords certainly aren’t going to give their tenants a break on their rent and our health insurance system IS, AFTER ALL, based on either full-time employment or being married to someone who has full-time employment. So, I get it, it’s complicated.

But with all this protesting, I still have to wonder, at what point did we, my fellow Americans, devolve to caring more about our individual rights than we care about our neighbors? I see this regularly, too. People who won’t wear masks because, it’s an inconvenience. People who get up in your personal space because they really don’t care or the rules don’t apply to them. People who believe in conspiracy theories because they think a certain political party is out to get them. People who think they know more than doctors and scientists. (That last one just slays me.) People who follow the One who said, “Love your neighbors as you love yourselves,” but stop short at hand washing, mask wearing, staying at home, sneezing into your elbow or whatever.

Now, I must confess. I am an introvert. I’m doing really well with staying home. My car misses me. I have sat out on my front porch for long periods of time and watched people go by. I have been very productive in my workshop for the past couple months. If we were getting graded for staying at home, I would get an A++. I realize that the extroverts are not doing well with this. This is possibly hell for them.

So, what did extroverted people do in 1918 when they were told to stay at home to keep their community safe from the Spanish flu? What did they do prior to 1955 (first polio vaccine) when they had to keep their children at home? I don’t know. They didn’t have FaceTime or Zoom to help them get through it, so maybe they wrote letters. A major inconvenience to them, of course, but they were willing to do it for the safety of their community because for some reason, back then, THE HEALTH AND SAFETY OF THEIR NEIGHBORS WAS MORE IMPORTANT THAN THE RIGHTS AND CONVENIENCES OF THE INDIVIDUAL.

What a concept. I think Jesus referred to this concept as “love.”

 

Copyright Banjogrrldiaries, 2020. All rights reserved.

COVID-19 and Rare diseases

Last night, I did not sleep very well. I had lots of things rolling through my brain, including the most recent CDC recommendation regarding the COVID-19 pandemic, that is, the recommendation not to hold gatherings of 50 or more people for the next EIGHT WEEKS. That puts us into May. Wow, that’s a long time. I’m really feeling sorry for the extroverts in my life.

What has really been subconsciously bugging me for several days now is this: who are the people who are poo-pooing the CDC recommendations, claiming this is all a hoax or saying that people are worried and paranoid about this virus for no reason, that it’s all over-blown and of course, media driven? Who are these people? I know some of them personally and I just can’t figure out the common denominator. They’re not all political conservatives or all liberals or even all libertarians. They’re not all religious conservatives or all religious liberals or all non-religious people. Who are these folks who are not taking this virus seriously and think the media has blown the medical professionals’ dire warnings way out of proportion?

Last night, while tossing and turning, I think I figured out who these people AREN’T. So, at least I’ve narrowed it down.

Worldwide, 3.5-5.9% of people live with a rare disease. As far as I can tell, not one person I know with a rare disease, like those of us with XLH, is shouting that all the news around the COVID-19 pandemic is a bunch of media driven hype or some kind of hoax. And why is that? 

We who have a rare disease generally have a very high regard for medical science and for people who work in medical care. When medical care professionals say  “hey, we’re dealing with a very serious community health issue,” we actually respect what they’re saying.

Also, when you have a rare disease and feel like crap most of the time, even when you’re on some sort of medical treatment, we certainly don’t want to risk getting something that makes us feel worse than we already feel. If the CDC says, “avoid crowds of 50 or more,” I’m more likely to say, “for me, that means avoid crowds of 5 or more so dear family, now is not a good time to visit, can you do FaceTime?” Additionally, when the CDC says “wash your hands a lot,” I think to myself, “can I possibly wash my hands more than I already do because I already border on OCD hand-washing, just to avoid getting a simple cold.”

As I think about it, the people whom I have observed as being poo-poo-ers of the CDC and the doctors and the media who reports what they’re saying are people who, generally speaking, rarely go to the doctor because they’re lucky enough to be in good health and some of them think they know more than doctors anyway. 

I love medical people. They’re often on the front lines and they especially are right now with this pandemic. 

I love the research scientists. They developed Crysvita, the best treatment that XLH-ers have ever had. They will also develop treatments and, eventually, a vaccine for COVID-19.

I respect these folks in the medical field who are warning us, for our own individual and collective good to “flatten the curve,” and practice “social distancing” and wash our hands constantly to protect not only the most vulnerable in our society but also to reduce the burden this is going to put on our health care system and the people who work in it.

I also love my fellow rare disease friends (especially the XLH-ers). They totally get why I might opt out of a large gathering in favor of keeping myself from getting a little cold or COVID-19. (Yeah, I don’t want a cold either.) It’s nice when people “get you.”

Sorry, healthy friends. I won’t be showing up to your gatherings and I will likely hunker down and keep myself well which in turn, may keep you well. Maybe you’ll thank me later.

Copyright 2020, Banjogrrldiaries and S.G. Hunter. All rights reserved.