Understanding The Rare Disorder Pseudohypoparathyroidism

Understanding The Rare Disorder Pseudohypoparathyroidism

I can't eat peanut butter and apparently, I shouldn't be alive.
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Ever since 2006, I was diagnosed at age 10 with Pseudo-hypo-parathyroid-ism.

Hey, my name is Chris, I can't eat peanut butter and apparently, I shouldn't be alive. Research says that guys like me with Pseudohypoparathyroidism usually die before birth. Altogether, I'm alive but I can't eat anything with phosphates like nuts, wheat, dairy, dried fruit, and most green veggies. The doctors say I was Assymtomatic, or I didn't have all the symptoms or it wasn't that obvious that I have the disorder. Symptoms of my disorder are numerous, however, I barely have any of them.

You probably never heard of my disorder, and I don't completely represent a perfect model of my disorder but here is some research about the topic.

What is Pseudohypoparathyroidism?

My own breakdown of the word "somewhat underperforming parathyroid." What's the parathyroid? It regulates the amount of calcium in the body.

Fundamentally, it is a condition pertaining to the parathyroid where the phosphates I take in prohibits absorption of calcium. Without meds, my levels of calcium are low, while phosphate and parathyroid hormone levels are high. Because phosphates are the bad guy, I cannot eat anything with it, or at least eat low levels of those foods. Those foods include nuts, dairy, wheat, dried fruit, and greens like broccoli, brussel sprouts, spinach, and asparagus.

What do I take to treat it?

I take Calcitriol before every meal and take tums 30 minutes after (since Tums are pure calcium). I have the choice between a gross liquid and Tums, however, I have no clue as to what the liquid is since I haven't taken it since 2006.

Supports the absorption of calcium.

"Treats low levels of calcium and bone disease in patients whose kidneys or parathyroid glands are not working normally."

Also treats Hyperparathyroidism (too much parathyroid glands), Rickets (softening and weakening of bones in children caused by lack of vitamin D), osteomalacia (softening and weakening of bones in adults caused by lack of vitamin D), and familial hypophosphatemia (rickets or osteomalacia caused by decreased ability to break down vitamin D in the body).

Symptoms:

Headaches, Stiffness or Cramps in the arms or legs, Blurred vision, Stomach aches, Lazy, Lethargic, Sensitive to Light. Seizures might occur in childhood; teeth with low enamel might erupt later in infancy.

How did I get it?

One of my parents X chromosomes

In X-linked dominant disorders, the female with only one X chromosome affected will develop the disease. However, the affected male always has a more severe condition. Sometimes, affected males die before birth so that only female patients survive. As a result females with the disorder more than double the number of males with it.

***Apparently I'm a miracle child; I'm a male with this disorder, which apparently is unlikely since most of my kind die at birth.

***My mom and dad have nothing like my condition so I must have had the gene but it was dormant (or not visible). But now I know that the one X gene I have has the disorder.

FLASHBACK TO BIO CLASS

Males= XY Females=XX

As shown below, if dad has it, only female offspring have the disorder gene. (in this case red means the X carries pseudohypoparathyroidism.)

As shown below, if mom has it, either a girl or a boy offspring has the disorder gene.

What happens if I don't take the Calcitriol?

Fog-brain, Stomach aches, Cramps, Painful peeing, Kidney stones, Death.

Fog-brain- my family's definition of the inability to think straight.

Stomach aches- they're inescapable, they're a side effect of Calcitriol, and a symptom of Pseudohypoparathyroidism, however, there's fewer stomach aches when taking Calcitriol.

Cramps- Occur if the medicine isn't taken in a matter of months.

Kidney Stones- I assume they occur after a half a year of not taking meds.

Death- May occur after a few years or so without meds.

What might happen if I do take Calcitriol (aka 'what are the side effects')??

  • weakness
  • headache
  • upset stomach
  • dry mouth
  • muscle pain
  • bone pain
  • metallic taste in mouth
  • difficult or painful urination
  • changes in vision
  • lack of interest in the things around you
  • feeling tired
  • lack of energy
  • fever or chills
  • stomach pain
  • pale, fatty stools
  • yellowing of the skin or eyes
  • runny nose
  • decreased sexual desire
  • irregular heartbeat
  • rash
  • hives
  • itching
  • difficulty breathing or swallowing
Cover Image Credit: Pexels

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To The Girl Struggling With Her Body Image

It's not about the size of your jeans, but the size of your heart, soul, and spirit.

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To the girl struggling with her body image,

You are more than the number on the scale. You are more than the number on your jeans and dresses. You are way more than the number of pounds you've gained or lost in whatever amount of time.

Weight is defined as the quantity of matter contained by a body or object. Weight does not define your self-worth, ambition or potential.

So many girls strive for validation through the various numbers associated with body image and it's really so sad seeing such beautiful, incredible women become discouraged over a few numbers that don't measure anything of true significance.

Yes, it is important to live a healthy lifestyle. Yes, it is important to take care of yourself. However, taking care of yourself includes your mental health as well. Neglecting either your mental or physical health will inflict problems on the other. It's very easy to get caught up in the idea that you're too heavy or too thin, which results in you possibly mistreating your body in some way.

Your body is your special, beautiful temple. It harbors all of your thoughts, feelings, characteristics, and ideas. Without it, you wouldn't be you. If you so wish to change it in a healthy way, then, by all means, go ahead. With that being said, don't make changes to impress or please someone else. You are the only person who is in charge of your body. No one else has the right to tell you whether or not your body is good enough. If you don't satisfy their standards, then you don't need that sort of negative influence in your life. That sort of manipulation and control is extremely unhealthy in its own regard.

Do not hold back on things you love or want to do because of how you interpret your body. You are enough. You are more than enough. You are more than your exterior. You are your inner being, your spirit. A smile and confidence are the most beautiful things you can wear.

It's not about the size of your jeans. It's about the size of your mind and heart. Embrace your body, observe and adore every curve, bone and stretch mark. Wear what makes you feel happy and comfortable in your own skin. Do your hair and makeup (or don't do either) to your heart's desire. Wear the crop top you've been eyeing up in that store window. Want a bikini body? Put a bikini on your body, simple.

So, as hard as it may seem sometimes, understand that the number on the scale doesn't measure the amount or significance of your contributions to this world. Just because that dress doesn't fit you like you had hoped doesn't mean that you're any less of a person.

Love your body, and your body will love you right back.

Cover Image Credit: Lauren Margliotti

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Let's Change Society's View On People With Disabilities

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Imagine that you are in this scenario: Your general psychology professor walks up to you after every class and tells you that you should drop out of college, give up on your dream of becoming an attorney, and he claims that you must be cheating because "people like you" do not get A's.

Also, consider this: When asked what they thought were the biggest obstacles that disabled students face in the social sphere using a few words, nondisabled college students replied with words such as "social skills", "functioning in a social environment", "talking about age-appropriate things", and "ability to maintain conversation". Do you recognize a pattern? The perception that nondisabled individuals have about disabled people and how they should treat and interact with them is severely flawed.

Now, of course, there are exceptions to this, people who have a loved one or close friend that is disabled may treat this population and talk to them as though they would treat or talk to any nondisabled person, but those people are few and far between. How exactly do I know this you may ask? Well I know because I am one of those people, one who has a physical disability and is often treated and talked to as though I am not equal to my nondisabled peers.

Now, since the issue of the way people with disabilities are treated by the rest of society is a bit of a broad issue, to say the least, I would like to specifically focus on how the way in which those with disabilities are frequently negatively treated by nondisabled people can translate into the development of psychological issues such as anxiety, particularly social anxiety, and depression, as well as low self-esteem and what we as a society can do to prevent the development of these issues from occurring. I personally feel that the negative treatment can translate into the development of these issues due to the effects of the unfortunate treatment being so emotionally destructive and painful that these issues are almost inevitably developed. Furthermore, I think that in order to prevent these issues from developing we as a society can make a concerted effort to try to change our perspective and mentality about how disabled people are to be treated and about those with disabilities, in general.

Another thing to consider is how we can change society's perspective of who disabled people really are beyond the typical stereotypes. One of the major changes that society can make in order to accomplish this is educating people from a young age about disabilities in general and how they should treat and interact with their disabled peers. Specifically, I believe one of the most effective ways of providing this type of education is through programs that could potentially be implemented as part of school curriculums. Additionally, including disability as a topic that can be focused on in the media would help to ensure that society eventually adopts a perspective that disabled individuals are "normal" human beings with goals and aspirations just like those who do not have a disability.

In addition, support that the unfair, negative and unequal treatment exists and is prevalent is evidenced, although not directly, by the perspective that the greater majority has adopted in terms of how we view disabled persons. Generally speaking, since the times of when people first began being diagnosed and labeled as disabled, society has been "taught" to regard and treat those with disabilities as though they are inferior, because as the word "disabled" implies, they have some lack or absence of ability, and thus they must be looked at as being inferior to those who don't have a lack/absence of ability. Which, to most people, would seem completely misguided and ignorant, however, although it is somewhat subtle, this mentality seems to still be prevalent in today's society.

Despite this evidence, those who do not agree may propose that although some people might still treat disabled people unfairly, it has gotten better. "We have made progress" is something they may utilize to argue their point of view. And while that may be true, we haven't quite gotten to the point where we can say that we have done all that we can do to level the playing field between disabled and nondisabled people. Maybe one day, we can finally accomplish that, and disabled people will no longer be looked at as just being everybody's inspiration, and instead start being recognized for some of their accomplishments in life and by accomplishments, I don't just mean existing, but rather thriving and conquering obstacles head-on.

The other aspect of the argument that we must address is whether or not this negative and unfair treatment could potentially contribute to disabled individuals developing psychological issues such as depression, anxiety, social anxiety, and low self-esteem, just to name a few. I feel that it definitely could contribute because the negative and unfair treatment will obviously cause the individuals being affected by it, lots of emotional pain, which could lead to the development of long-term psychological difficulties. Moreover, it might seem obvious and intuitive that individuals with disabilities often deal with issues related to self-acceptance, and so the ill-treatment could exacerbate these issues and generate greater and more complex psychological difficulties as well.

Now, of course, people who may refute the idea that the treatment could cause these issues may say that in order to avoid the development of them, people should just "toughen up" and "get a thicker skin", it's just not that simple. In fact, it could be said that it is inevitable for disabled individuals to develop these issues due to many of the obstacles that they face daily. Overall, the issue of disabled people being unfairly and negatively treated and the consequences of that is a complex issue that I only have scratched the surface on, here. There is still much to be done to rectify society's mentality regarding this population and to help prevent against the development of psychological issues in persons with disabilities, but rest assured, we are slowly but surely getting there.

People with disabilities are just that – people. They deserve to be treated with as much kindness and respect as any other group of human beings, but unfortunately treating those with disabilities in such a way doesn't happen nearly as much as it should. Hopefully, one day in the near future the playing field will be as leveled as it can possibly be and society will view disabled individuals in the same way as nondisabled persons.

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