Wednesday, November 14, 2018

Haley Reading Group: “The DIY Scientist, the Olympian, and the Mutated Gene”

[The Best American Science and Nature Writing (2017)]

David Epstein’s article “The DIY Scientist, the Olympian, and the Mutated Gene” follows the story of a woman working to diagnose and very rare disease. Epstein works with a housewife named Jill Viles, the famous Olympian Priscilla Lopes-Schliep, and his knowledge the uncover the truth about a mutant gene shared between families.

Epstein writes that Viles extended her Dad’s life by researching several medical books and demanding that doctors re-examine him, proving that they did have a rare disease (210). This point demonstrates that with enough courage, knowledge, and determination Viles uncovered more on the disease than any other person in the world.

After reading this article, what’s a new or reinforced idea you have about either persistence or DIY science?

56 comments:

Jordan R. said...

One of the most interesting statements is about medical advancements for Alzheimer's, "An Alzheimer's treatment may one day come from ongoing research on a small group of people in Iceland who have a version of a gene that protects their brains in old age," (219). Seeing that Alzheimer's is such a devastating disease in how it progresses towards brain degradation, finding an advancement towards a better treatment would be very beneficial.

Ivyanne B. said...

After reading the article "The DIY scientist, the olympian, and the Mutated Gene" it really showed me that persistence can pay off. Jill knew that there was something wrong with her and after being turned down several times she still never gave up and found new ways to get the answers she wanted. "Jill had been right about her self-diagnosis, and the researchers discovered the responsible gene mutation" (pg 211). She never gave up on herself of what she believed that she had. She didn't let anyone bring her down and she was able to accomplish astounding scientific research.
-Ivyanne B.

gabby said...

I found that this section of the book, "The DIY scientist, the olympian, and the Mutated Gene" was very interesting. I was excited to learn about the advancements made for the disease of Alzheimer's. I had never heard of the research group conducting extensive research in Iceland. One of the statements that interested me was on page 219, it read, "...a small group of people in Iceland who have a version of a gene that protects their brains in old age...". I think this is very important seeing how much damage this disease has done to many people and families throughout the world. Finding a treatment and or a cure would be very helpful to the lives of many.

Gabby Wimes

Sierra Taylor said...

"It took a year to find a doctor to test Priscilla. She visited several clinics. Some told her they just didn't do that test. Others said they weren't sure how to interpret the results, so they felt it wouldn't be responsible to do the test." It took a whole year to just find a doctor. Finding a doctor is just the beginning. In the end, she was able to find out for sure what was going on. Persevering like that takes a lot of courage and patience.

Asher said...

Before reading 'The DIY Scientist, the Olympian, and the Mutated Gene' I gained more insight on testings such as this. I have always been interested in genetics and how much they play a part in our existence, besides the obvious. "Research on a rare gene mutation which gave people such low cholesterol levels is a wonder they were alive led to a treatment for high cholesterol" (pg 219). I think the idea of a matching program that matches people with similar diseases and genetic mutation will definitely making an impact in the scientific community.

- Asher Denkyirah

Jazsmine Towner said...

On page 210 it states "She (Jill) saved her dad's life... If it wasn't for her, how would we have ever known this... But I think it was a hard burden for her because it seemed like no one else was looking" (Epstein). This excerpt was eye-opening for me because it displayed how hard it is to get doctors to believe you. I think that doctors have the idea that they are smart and well-trained that when others do not agree they disregard what they are saying. Jill had to continue to fight for her voice to be heard and in the end, she was right. This new insight of never giving up when you know something is wrong is what I learned from Jill and her father's story. Sometimes Doctors cannot see the bigger picture and are too quick to disregard when they need to learn to listen to the concerns of their patients and their patients' loved ones.
-Jazsmine Towner

Kyla T. said...

After reading the article, I found it amazing that Jill went so far to prove to doctors and scientists that her family had Emery-Dreifuss. "Discouraged by her encounter with the neurologist... she convinced a nurse friend to smuggle needles and test tubes to her house. They filled them with her family's blood. (211)" She went to incredible lengths to help her family, and such persistence is something that I can now admire.

-Kyla T.

Mackenzie Cohoon said...

the article taught me a lot about persistence. Jill had been written off by a majority of the people who she went to, and even those who responded to her were skeptical of her. Most people would give up, but because she didn't, not only did she prolong her father's life, but she also managed to discover something in another person's life that at least saved her from going to the hospital. Her persistence was the key and it led to her saving two lives, and discovering that she had two rare diseases of her own, and furthered medical research in gene mutation. These are remarkable accomplishments done not by a scientist, or even a phd student, but by a housewife who nobody believed in except herself. But because she believed in herself, she persisted.

Aliyah Johnson said...

One Interesting point I realized about persistence is that no matter what position a person holds (Doctor, Police officer, Legislator) people have the right to ensure that the position or job is being executed correctly, especially if that position has authority of others. A person should not feel intimidated by a doctor's position because although doctors know many things, they are still human and make mistakes. Jill understood this so she was persistent in getting her dad a referral. the text says" But Jill had trouble getting one and was so relentless that eventually they gave in" (210 Epstein). I am grateful that her persistence was awarded.

Brandy C said...

One thing that I found interesting after reading this article was about Alzheimer's. On page 219 it states, "An Alzheimer's treatment may one day come from ongoing research on a small group of people in Iceland who have a version of a gene that protects their brains in old age". This was interesting to me because I am glad that there has been some advancement in finding a treatment to this disease since it so common. I also think that the fact that people have a gene that is protecting their brains from this disease is interesting as well.

-Brandy Collier

Unknown said...

One thing that I liked was that Jill never gave up when everyone was telling her that the problem was from a virus. "So 19 year old jill put on her most serious navy pantsuit, again gathered up her papers, and took them to the neurologist in Des Moines." It was so crazy all that jill had to do so someone can take her seriously on get diagnosis.
-Tara Thompson

Raillane Kamdem said...

The artical was very interesting in that it enlightened me on how persistence, especially regarding disease, is intricate in finding cures. Jill demonstrated that through her story, and without her he wouldn’t have known he had a disease (210). She never gave up, and that further proves what persistance can do for science and medicine.

Mike Dade said...

One phrase that was always preached to me when I was younger and that I still stand by to this day is "where there's a will, there's a way!" I think this article was not only a good story, but a good representation of that too. If you want something done sometimes you just have to go do it yourself. There's some people that rather just wait on something to change for them, or think that a change can't happen, when in all actuality it could be achieved if you just make that effort to pursue it.

Aleeya Barrolle said...

"Finally Jill went to a medical conference and approached the foremost expert in lipodystrophy, Dr. Abhimanyu Gary, who runs a lab at the University of Texas Southern Medical Center" (217). Persistence is very important, if you want something done figure out how to make it happen.

-Aleeya B.

Devin Ellis-Martin said...

This article is very interesting. However the most interesting quote I have found is, "An Alzheimer's treatment may one day come from ongoing research on a small group of people in Iceland who have a version of a gene that protects their brains in old age"(219). I found that this quote was very interesting to DIY Science.

Jeremiah Terrell said...

The article reinforced the idea that you should always trust your intuition even when most people believe you are completely wrong and work relentlessly to prove that you were right. . In the article, Jill did research to find the cause of her problems when doctors wouldn't. After she presented her research, doctors still ignored her, but it did not stop her from working to make a difference for others even if it was too late to help herself.

Jayla Pierce said...

What i found interesting is that this women, Jill, decided on her own free will to research and study scientific books in order to diagnosis herself because she wasn’t given the treatment she needed. This article goes to how certain medical discoveries were found. Curiosity and determination is what brought on this discovery. Jill could’ve believed what these experience, qualified doctors were telling her, but instead she went with her gut feeling and found answers and results.

Adejoke Adanri said...

I am amazed at the Jill's persistence towards meeting with Priscilla and raising awareness on this disease and finding a way around it. On page 215 she states "I've had crazy ideas, like can I show up to Canada at a meet-and-greet or a track event?" After doctors didn't know how to interpret Priscilla's results, Jill went to a medical conference and Dr. Garg who ran a test on both of them confirming Jills theory that they shared the same gene. Her determination is inspiring and will help a lot of people.

Jasmin Smoot said...

A number of people have found themselves Googling their symptoms rather than going to the doctor to save a visit to the ER. Reading through the text, what I found interesting was intern syndrome. The doctors Jill worked with stated that most medical students develop this after being introduced to new medical information, so much so that she gave up her DIY diagnosis because it was described as unhealthy. In a way, we are all victims of intern syndrome with new technological advances.

Anonymous said...

Honestly... This was barely interesting at all and didn't really have any relevant points to me. Just one of examples of self-motivated people actually working to get results are getting results. Nothing new, nothing interesting. Good for them, but like... this was uninspiring. I don't know what I'm supposed to find in this that's new or valuable. I can't BS this response.

Ash Mason

Alliyah M. said...

After reading the article, I realized that, in rare cases, it is okay to question doctor's opinions. Jill was able to not only correctly diagnose herself with an extremely rare disease, but also help diagnose two other people and save their lives. This was only possible because Jill went against doctors' opinions where many said that she didn't have this rare disease.

On page 213, Epstein stated "She was learning more about all the cardiac problems- the average lifespan of subjects in case studies she read was around 40 - and the stress landed her in the hospital." For this to happen today is especially more likely because we have access to a lot of medical information on the internet. Although the article showed that DIY science can be a somewhat valid, I think people must be very careful when looking up their symptoms or disease.

Ronnie Akpan said...

One reinforced idea that I gained from this is acknowledging Jill's persistent determination to find a link between the mutant gene and the other subject involved. Although the two people (a housewife and a former Olympic star) obviously come from two different backgrounds, the fact that these two people shared this similar gene is not only astounding but also intriguing. Viles' new technique of the DIY science method helped him to focus more time on the two people involved than just passing it along to another doctor, which may or may not have interfered with the result of the test.

Trevon Bosley said...

I like this story. Learning to never just sit back and accept the circumstances you are given but actually fighting to get what you want. And in Jill's case fighting to get answers of what disease was affecting her and why it was affecting her. I also like how the writer stated," She'd picked up on a tidbit in a very technical scientific paper about potentially reversing muscular dystrophy."(222) Understanding that Jill's determination towards her goal is still there.

Kelsey McNeil said...

After reading this article, it showed me how curiosity and wanting to have answers is a very driving force. On page 209 it says:"...but not from the knowledge that if she was going to figure out what was happening to her body, she would have to go it alone" (209). Not knowing what illness one might have would be so frustrating and it is understandable why Jill went to figure things out by herself after getting no answers from doctors. On page 210 they talk about how Jill saved her father's life just by reading about diseases that she thought she might have and realizing her father's problems too. It's so amazing how reading about different things and being curious about those things could save people's lives.

-Kelsey McNeil

Zuriah Harkins said...

Before reading the article, I always thought that it was inappropriate to try to diagnose yourself. You hear people making jokes about it all of the time on social media. In addition to that, we're often told not to google our symptoms to avoid scaring ourselves. I can see how self-diagnosing could be a problem, but in Jill's case, it helped her understand her condition more, and often helped other people understand their own personal similar conditions. I can't imagine going to a doctor to try to figure out what's wrong for me, just for the doctors to tell me that they aren't sure. It also must have been frustrating to be simply dismissed or ignored after expressing your concerns to your doctor. Therefore, I feel like DIY science is definitely necessary, and persistence is also equally as important. If Jill wouldn't have continued to gain knowledge about these diseases, many people would have suffered as a consequence. And now, maybe scientists will be able to find a cure or treatment if they can understand the disease more.

Zuriah Harkins

Shaina Falkner said...

Before reading "The DIY Scientist, the Olympian, and the Mutated Gene", I was always told not to self diagnose and if I feel like something is wrong with my health to see a specialist. After reading the article, I realized that that statement is not the best idea because doctors don't always have the answers. On page 210 it reads "She saved her dad's life... If it wasn't for her, how would we have ever known this... But I think it was a hard burden for her because it seemed like no one else was looking" (Epstein). This shows that nobody knew how to save his life. But because Jill did her research, she saved his life.

Chidera Onyeizeh said...

Reading this “The DIY Scientist, the Olympian, and Mutated Gene”, I thought it was interesting because a lot of the times doctors say don’t self diagnose yourself because you might think you and a life threatening disease when you simply just have a cold. I feel like this cold be used as a story against that. However, there are other cases were doctors won’t listen to the patients when they say they don’t fell good. Like when minority women are giving birth and request pain medication.

Chidera Onyeizeh

JaLeah M . said...

When the text read “Jill had been right about her self-diagnosis, and the researchers discovered the responsible gene mutation" (211), this line as well as the context of the text as a whole led me to think of how situations such as these are being portrayed more and more on medical drama tv shows such as Grey’s Anatomy. Not only portrayed on tv, but situations such as these are being talked about more and more as if this is a growing issue in the world of healthcare. With that being said, I am glad Jill never gave up on her self-diagnosis and I think it’s important for everyone to take their health serious and be persistent with it.

Anonymous said...

The theme of persistence was illustrated with Jill. She had a rare muscular condition which made it extremely difficult for her to work. Despite frustration and constantly trying to find the problem, Jill was persistent. She continued to question and search for a solution. It reinforced to me that in order to solve a problem that is persistent, you have to be even more persistent to get a positive result. Shelby W.

p. 208-213

Anonymous said...

I never read or had prior knowledge regarding DIY science, so this entire article was a new and interesting topic for me! The part of the article that stood out to me was on page 212. " Jill came across an incredibly rare disease. A disorder called partial lipodystrophy." " Looking at photos of patients, all Jill could think of was that they looked like her family members". I found this particular part to be interesting because it showed her determination and persistence to discover the disease that was affecting her body. She remained diligent when she could not find the answers from doctors. Nia P.

Daeja Daniels said...

Reading this article, helped me better understand persistent. And we put our lives in the hands of people we have deemed as capable. However, remembering that you know your body better than anyone else is important to me. In the article it says , "So 19 year old jill put on her most serious navy pantsuit, again gathered up her papers, and took them to the neurologist in Des Moines." Her persistence was crucial not just for her but others as well.

Desmond Crumer said...

Before reading this article I already identified as a big supporter of genetic research. Seeing that there are a group of people in Iceland who have a gene which pro tects brain degredation strengthed my belief further. (219) This research can help so many people keep what remains of their loved ones broken mind.

Alishiana Ivy said...

After reading this article, i learned alot about persistence. With enough persistence you can accomplish anything. In the article on page 210 it stated that “she saved his life”. She went out of her way to make sure her father's life was extended. It reminded me of an interview that i recently saw that said that doctors tend to disregard black womens concerns because they are viewed as illegitimate. Doctors need to take their patients symptoms more seriously.

Kenisha Townsend said...

After reading this article I realized that persistence does get you somewhere eventually. If Jill had just given up, she wouldn't have found answers to her condition nor her family's. She had been rejected many times, but due to her persistence the doctors eventually gave in. Furthermore, many people fall into the idea that doctors know everything, so if they say nothing is wrong, then that's the truth. However, doctors can be wrong. They do not know everything. One should know themselves better than anyone else to know when something is not normal. All in all, without persistence, we wouldn't have many of the discoveries or inventions we have today.

J'kolbe Kelly said...

I believe that DIY science is really just the heart of science as we know it. Jill observed and hypothesisized a theory and tracked evidence to prove what she thought. Though she isn’t a certified scientist she has the drive and perseverance to be in that field

Tomika Collins said...

Prior to reading this article I had no knowledge of DYI or persistent science. I am not really a science buff so I did not find this article all that interesting. With that being said I feel that being persistent about finding out knowledge about a topic is always the best way to go. Never let anyone discourage you or talk you out of doing just that. This is exactly what Jill did when she was trying to figure out what disease if any she was suffereing from.

Joshua Jones said...

DIY science can be considered to be the foundation of research based and modern day science. Looking at individuals such as Gregor Mendel, applying the scientific method to DIY can be fruitful. Looking at the article on page 210-212, I think that the main idea that was reinforced is courage. When learning about the disease and how Jill saved her father's life, I believe that courage was the main factor. She believed in herself and generated positive results. This idea can be applied to almost everything in life.

-Joshua J.

Anonymous said...

I felt hat many people try to use the internet to self diagnose themselves or others but they tend to be wrong. It was amazing to that in pages 209-210 Jill was able to do some much research that she found out what disease her family had and was able to get save her fathers life. It is interesting to note that the doctors could not figure out what was wrong but Jill was able to with some time and research. If it was not for Jill’s persistence her father could have died.
Tatyana C.

Sydney Oats said...

An Alzheimer's treatment may one day come from ongoing research on a small group of people in Iceland who have a version of a gene that protects their brains in old age," (219). Alzheimer’s is a disease that has taken away many loved ones. It will be a miracle for many people if a cure is found because many people are affected by it, or worry about being affected by it.

Sydney Oats

Jasmyn Kloster said...

On page 209 it states "...but not from the knowledge that if she was going to figure out what was happening to her body, she would have to go it alone". Because Jill did not know what illness she had, she had to go figure it out herself after no doctor could tell her what was wrong. On the next page, it states howJill even saved her father's life just by reading about diseases that she thought she might have and realizing her father's problems as well. Sometimes doctors and nurses don’t believe their patients when they are sick or they misdiagnose, and I think that is a real problem in the medical field today. But this article proves with a bit of curiosity and persistence, you can save your self as well as others, just by a quick search.

Jonathan Sanchez said...

This article opened my eyes a little bit. I always felt that a self-diagnosis is something that could be potentially dangerous because it can instill a victim mentality in the person. However, this article proved me that it is wrong to assume that someone doesn't know what they are talking about when they don't have the word "doctor" in front of their name. Doctors do this today where you think yu have an ailment and the doctor will look at you and ask how you know and proceed to show off their intelligence in a "high-and-mighty" attitude. Jill saved her father just by learning herself and reading about diseases, not by studying for eight years in college and being paid six figures for it.

Youssef Hassan said...

After reading this article i learned to never give up even if it seems like their is no other solution to a problem. Even though doctors have went to school for a long time, and they are most likely more knowledgeable in terms of human anatomy and physiology, you should not think of their opinions as final. Which is what Jill did when she found out about her mutation.

Brandon N said...

"The DIY Scientist, The Olympian, and the Mutated Gene" was an interesting read. Jill's persistence in finding what was going on with her was inspiring. It was really sad to see that her father and herself were put into wheelchairs around the same time. Thankfully, her son never got her mutation, unlike what was brought down to her from her father

Erica King said...

Reading this article, what interested me was the fact that it took Priscilla a year to find a doctor but she never gave up even knowing that once she finds a doctor it still takes a lengthy timeframe to even discover the problem and find solutions for it.

Samontriona P said...

This article "The DIY scientist, the olympian, and the Mutated Gene" was very interesting. It basically backed up my thought of persistence being key. Although it took Jill a while to get what she wanted she never gave up. It also brought to light how doctors will just pass on cases that they do not think are relevant. She tried many times and the doctors were not able to find out, but with her persistence and dedication to help her father, she was able to save his life.

Unknown said...

I really enjoyed the message of persistence in this article. The author writes, she saved her dad's life...if it wasn't for her, how would we have ever known this...but I think it was a hard burden for her because it seemed like no one else was looking" (Epstein, p. 210). It took quite a lot of courage and determination for Jill to accomplish the feat she did. It was simply inspiring to read about a woman who refused to give up, despite how bleak the situation seemed.
-Kathryn Hatches

Kendall Clark said...

After reading “The DIY Scientist,” readers can see that if you believe in something and work hard enough at it, your hard work can pay off. Vile’s love for her father outweighed the opinions of any medical doctors, and her continued persistence and research helped to save her father’s life. I find it amazing what one can do with the right amount of determination, and this article goes to show that if you can demonstrate the courage it takes to continue through your work even when everyone says you’re wrong, brilliant things can happen.

James Beverly said...

This article really highlighted the topic of being persistent. Jill kept on being persistent knowing that something ailed her and she needed help. However, she kept on getting rejected and turned away - but she stayed persistent through it all. It also showcased how sometimes doctors don’t prioritize those issues that could be important. At the end, Jill was able to save his life solely by staying persistent.
-James Beverly III

Anonymous said...

From what I have read, I cannot say I am surprised it took that long to get a diagnosis from the doctor. Not that I have anything against doctors or what they do and how they do it, I have just been in a similar situation before. I did my research and told them what I think I could have and they did not listen to me whatsoever because they thought I was just being dramatic and such. So they did everything they could to prove I was wrong when in the end, after so much time and money, it turned out I was right. On page 211, it made me think of my mom because she responded the same way her mom did when I kept insisting that I was right. I know doctors encounter people who self-diagnose all of the time and they get annoyed, as we all would, but that person knows more about themselves than they would, so they should at least hear them out. Kaelyn B.

Maya Searcy said...

This article reinforced the idea that doctors don't know everything and you should trust your intuition. Rare disease can be hard to diagnose because they are not talked about every often and there is little known about them. It may be difficult to diagnose because the doctors may have heard of the disease one time in passing ten years ago or even never at all. It shows that we have a lot to learn. On pg. 219 it says "a small group of people in Iceland who have a version of a gene that protects their brains in old age." This proves that we have much more to research and although doctors have a lot of knowledge they still don't know everything about medicine.

Tela Medearis said...

Persistence most definitely pays off! I am an extremely persisitent person, especially when I am in a situation where I am 100% confident. I have had a similar situation where I had to convince doctors for years that my symptoms were real and that I wasn’t faking it. Much like Jill, I “...was so confident that in her annual ski trips to the Mayo clinic she started taking a pen from her purse and writing “Emery-Dreifuss” on her medical chart” (Epstein 211).Her persistence and her spending all of that time researching to prove her disease/mutation even thiugh she had medical personnal telling her she was crazy, is extremely admirable. She had a gut feeling and stuck to it.

-Kytela Hill (Medearis)

Natasha said...

One idea I found very intriguing is that there is a new website called Matchmaker Exchange that is "a kind of Ok Cupid for rare diseases, where people with uncommon conditions can be matched with other people with similar diseases and gene mutations, in the hope that it will spark new discoveries" (p. 219).

I think this site is great because there have to be cases like Jill and Priscilla's across the globe. This site allows these people to connect with others that have gone through similar experiences. Also, it could be potentially lifesaving for some individuals who don't know what rare condition they have or perhaps were misdiagnosed.

Natasha H

Stella N said...

After reading this article, the new idea I have about persistence is that it is it is very necessary. In the article that was the only way Jill could accomplish what she needed to. I'm grateful her son didn't get the mutation aswell. You have potential when you keep going but giving up not only diminishes the work you did previously but completely stops any chances of you reaching your goal in the future.

Crystal Rice said...

Persistence is key! On page 211, it says, "...Jill waited for confirmation...Jill had been right about her self-diagnosis, and the researchers discovered the responsible gene mutation." This actually made me happy because so many times I want to give up on things, for example, I wanted to give up my dreams of being a nurse because of how difficult classes were and I doubted myself a lot, but I persisted in spite of everything. The persistence she had and the confidence she had in herself shows how powerful one can be and how much one can accomplish when you put your mind to it and not let anyone make you deviate from the goal you have set.

Crystal Rice

Crystal Rice said...

Persistence is key! On page 211, it says, "...Jill waited for confirmation...Jill had been right about her self-diagnosis, and the researchers discovered the responsible gene mutation." This actually made me happy because so many times I want to give up on things, for example, I wanted to give up my dreams of being a nurse because of how difficult classes were and I doubted myself a lot, but I persisted in spite of everything. The persistence she had and the confidence she had in herself shows how powerful one can be and how much one can accomplish when you put your mind to it and not let anyone make you deviate from the goal you have set.

Crystal Rice

Jada James said...

Self-diagnosis is really vilified by people who I think don't understand the many complex and multi-faceted reasons why people do so. In this case, Jill desperately needed answers and assistance that nobody seemed interested to give her until she took matters into her own hands. I truly think that's inspirational behavior as people die every day because their doctor decides to not take them seriously. Jill was an advocate for herself and her father and ultimately altered not just their lives but the lives of other, for the better.