In this first unit of our exciting new STEAM class Disease, we learned and discussed about all types of diseases that can affect a person physically, what systems of the body that disease interferes with, why some disease affect certain people more, and how to complete a square. Completing the square is a math concept that helps us turn a quadratic math equation into an x= equation. In my action project, I wrote about an interview I did with my cousin who was diagnosed with Spina bifida and I've drawn out a diagram showing what and where Spina Bifida is really affecting in her body. The Patient Profile is about her experience living with Spina Bifida. Another section is more focused towards the disease itself and what traits and common symptoms this disease has. Throughout this class we will be exploring and learning all about diseases, so with this first action project, I hope you enjoy!
Patient Profile
My cousin Julia was born with Spina Bifida, a disease that would drastically affect anyone’s life. Because she was born with Spina Bifida, she has never been able to walk; For all her life, she has been restrained to a wheelchair. Spina Bifida is a birth defect that Julia has had to live with for 15 years, without the ability to walk, with constant assistance by her side. “It’s hard for me to get dressed without the help of someone else, like my mom or a nurse.” She told me in an interview. She also explained and pointed out some of her symptoms which included muscle weakness in her legs and muscle stiffness in her right hand. “As you can probably see, my hand doesn’t move as much as this the one.” She said as she pointed to her other hand.
Julia has also been receiving lots of treatments all throughout her life. When asked how many she has had, she responded briefly with and a tired look on her face by saying, “A lot”. My cousin has Myelomeningocele - A severe type of Spina Bifida, that occurs because there are multiple openings in the spine. Spina Bifida is also caused by a Folate deficiency which is a lower than usual amount of an important vitamin for a developing child. Julia has had continuous therapy sessions in January where she had been subject to one major surgery to help her with her symptoms and some of her pain. Several years ago Julia was getting treatment for her disability of walking, Julia received a walker that traveled from the bottom of her feet to the upper middle of her back and reached down her arms. This was part of her exercise to get her muscles stronger for surgery and for life. Though Julia didn’t like this procedure, she still went forward with it and struggled a lot, so that exercise wasn’t part of her life for much time at all.
Spina Bifida is a neural tube defect - which is the defected structure in the spine along with the tissues that surround it, Spina Bifida is a neural tube defect. Spina Bifida is a birth defect that happens when a child’s spine isn’t formed correctly before birth. Spina Bifida is also a genetic disease that can happen to any child as they are born, this disease cannot occur to anybody that is already born, which also means that Spina Bifida cannot be transmitted to other people. There is no way to catch Spina Bifida because it is a birth defect, although it is more likely to happen if a parent has Spina Bifida or has family history with Spina Bifida. To my knowledge, Spina Bifida is not within my family’s history, so Julia just was a case where it could happen to anybody. Julia is paralyzed from the waist down (causing her to be restrained to a wheelchair) and stiff muscles in her hand and wrist. Her affected body systems include her muscular system (because her unused muscles in her legs and her stiffened muscles in her wrist), her nervous system ( her lower half is paralyzed, she is unable to move her legs) and her skeletal system (her weakened bones that are attached to the muscles but, aren’t being used been used).
Patient Profile
My cousin Julia was born with Spina Bifida, a disease that would drastically affect anyone’s life. Because she was born with Spina Bifida, she has never been able to walk; For all her life, she has been restrained to a wheelchair. Spina Bifida is a birth defect that Julia has had to live with for 15 years, without the ability to walk, with constant assistance by her side. “It’s hard for me to get dressed without the help of someone else, like my mom or a nurse.” She told me in an interview. She also explained and pointed out some of her symptoms which included muscle weakness in her legs and muscle stiffness in her right hand. “As you can probably see, my hand doesn’t move as much as this the one.” She said as she pointed to her other hand.
Julia has also been receiving lots of treatments all throughout her life. When asked how many she has had, she responded briefly with and a tired look on her face by saying, “A lot”. My cousin has Myelomeningocele - A severe type of Spina Bifida, that occurs because there are multiple openings in the spine. Spina Bifida is also caused by a Folate deficiency which is a lower than usual amount of an important vitamin for a developing child. Julia has had continuous therapy sessions in January where she had been subject to one major surgery to help her with her symptoms and some of her pain. Several years ago Julia was getting treatment for her disability of walking, Julia received a walker that traveled from the bottom of her feet to the upper middle of her back and reached down her arms. This was part of her exercise to get her muscles stronger for surgery and for life. Though Julia didn’t like this procedure, she still went forward with it and struggled a lot, so that exercise wasn’t part of her life for much time at all.
Spina Bifida is a neural tube defect - which is the defected structure in the spine along with the tissues that surround it, Spina Bifida is a neural tube defect. Spina Bifida is a birth defect that happens when a child’s spine isn’t formed correctly before birth. Spina Bifida is also a genetic disease that can happen to any child as they are born, this disease cannot occur to anybody that is already born, which also means that Spina Bifida cannot be transmitted to other people. There is no way to catch Spina Bifida because it is a birth defect, although it is more likely to happen if a parent has Spina Bifida or has family history with Spina Bifida. To my knowledge, Spina Bifida is not within my family’s history, so Julia just was a case where it could happen to anybody. Julia is paralyzed from the waist down (causing her to be restrained to a wheelchair) and stiff muscles in her hand and wrist. Her affected body systems include her muscular system (because her unused muscles in her legs and her stiffened muscles in her wrist), her nervous system ( her lower half is paralyzed, she is unable to move her legs) and her skeletal system (her weakened bones that are attached to the muscles but, aren’t being used been used).
Diagrams
 |
| "Affected Nervous system" IF 2018 |
 |
| "Affected Muscular system" IF 2018 |
 |
| "Affected Skeletal system" IF 2018 |
Conclusion
I really enjoyed this unit, the math wasn't super difficult but was still challenging. Researching and learning about disease isn't the easiest subject to get into, especially when you write about somebody who is close to you. I look at this unit as a window of discovery to different people's lives who have a disease that can go as far to life-threatening to a disease that is very minor. I learned a lot about the person in my action project, a good example being: I've known her all my life and yet this whole time I never knew the name of her condition. This was a very applicable learning experience that I hope to replicate in the other units of this exciting journey in Disease.
Citations
“Spina Bifida.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 17 Oct. 2016, www.cdc.gov/ncbddd/spinabifida/facts.html.
F, I, and J M. “Spina Bifida interview.” 10 Feb. 2018.
“Spina bifida.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 26 Jan. 2018,
I also have Spina Bifida, but from what I understand, my case is rather benign, and I do not have any noticeable physical characteristics that would make it easily visible to others. I am able to walk, use the restroom, eat, dress, and basically do most or all of the same things that most people whose spine developed properly are able to do independently. I also have normal or near normal verbal communication and intellectual functioning.
ReplyDeleteI asked my mom what led to my diagnosis, and she explained that it was picked up on a scan for symptoms that I am not sure were related.
I also have Autism Spectrum Disorder (most likely level 1, the least severe level), ADHD, and a minor spinal cord curvature, however, I am not sure whether or not any of those conditions are a result of my Spina Bifida.