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#muscular dystrophy

Yip Pin Xiu is an amazing, 28 year old Paralympic swimmer from Singapore. She has won gold in both the Beijing 2008 and Rio 2016 Paralympic Games in the 50m backstroke, as well as a gold medal in Rio for the 100m backstroke.

She uses a wheelchair because of muscular dystrophy…

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What is my body asking for? What is my mind asking for?

Everyday is different with what my body is asking for. It truly depends on the day, but with this quarantine, it is rather consistent. Due to my disability, too much activity can leave me feeling very fatigued, while not doing enough can make me feel like I’m allowing my muscles to get weaker, something I won’t gain back. This can be extremely draining on my mental health, especially with the isolation I’m forced to be in with our world’s state. I’m not able to hike, bike, run, or anything of that sort. I can’t be on my own outside without feeling in immediate danger. I have the fear of falling and not being able to get back up on my own. My loved ones worry for my safety, so I’m confined in my room or going out with other people. My body really wants something that I won’t really ever have, unfortunately. With that being said, the things my mind is asking for really varies. 

Some days I can be really positive, because what other option do I have? There is nothing in my control to fix the state my body is in. My muscles will get weaker to some extend regardless of what I do. Of course some days are bad, but this is when I get in my head and realize that I am not in control. I am a person that really loves spontaneity, but with my body it can be super hard to do that. When you have a disability, in my experience, you need to know plans at every angle to ensure that it is accessible for you. This can be a huge let down when all of your friends want to go somewhere, but not everything is accessible. Many people don’t realize how many things people with disabilities have to think about depending on their disability. This can be things like, are there stairs, accessible bathrooms, is the car too high or low to get in and out of, will the wheelchair fit in the car, will the walking be too much, are the floors level, will there be flashing lights, will there be people to help me get up and down from my seat, and so many more. This can really put a damper on wanting to go out because sometimes it just feels like too much to consider all of those things. 

It also draining to find friends who really get it and don’t make it feel like you are a burden or avoid bringing you because they recognize all of the things they will have to help you with. I am fortunate enough to have a good circle of friends that make me feel welcome, and I know they value me for what I am and genuinely don’t see my disability. I do think every person in your life serves a purpose, but they aren’t always pleasant experiences. I am going into my senior year of college, and it has took all years of grade school to find those people. High school I had time to figure out what type of friends I really wanted/needed in my life, and I’m really fortunate for that time and only hope to look back at that time with fondness. This gives me some resolution to my life and allows me to let go of the negative feelings. 

Although I am working on myself and the negative feeling I have for that time and the people I may hold some negative feelings towards, my mind tends to go back to the negativity and it can really struggle with that. I have avoided talking about the friends that were toxic for me at that time because I’m sure I wasn’t perfect, so I recognize that people make mistakes and I know that what they did/said doesn’t make them bad people. For quite a few years I really let that go, and recognized that they just weren’t meant to be in my life. I really made quite a bit of progress, and truly allowed to let things go and discover myself. Over this past year, I heard that one of those people were expressing to others how terrible of a person I was. Initially, I felt quite a bit of anger and negative feelings toward them, but realized I was giving them the power to take back all the progress I have made over the years. I know they served a purpose in my life, and I only wish them the best and hope they find a way to let go of those negative feelings. Some people may believe I am a bad person, and that’s okay. There will always be those people, but the ones who are worth being in your life are the ones that will listen and get to know you as a person. 

Over time I have lost many people whether is was death or the choice of theirs, or mine, to leave. It is really hard to know that there are people out in the world that I put so much effort into, and so many things I revealed to them. I had a hard time realizing why my ex left, and questioned everything in the sun of what I possibly could have done, but there wasn’t an answer. I questioned why someone who was so close to me dropped so quickly because of something so little. Did I do something wrong? Was there something physically wrong or not enough for me? I have taken the time to either fix the toxic traits I had, and recognizing the toxic traits they had, and the positives of not having them in my life anymore. This has allowed me to look back at those experiences with fondness, knowing they had a purpose in my development and theirs as well. I only hope that those people also take that strive to improve themselves and allow themselves to drop that weight off of their shoulders. Life is too short. 

My mind is asking for forgiveness of what I have done wrong, and to give myself the time to recognize and evaluate my choices and the people I surround myself with. Although this quarantine is giving me many hardships, it is allowing me the time for healing and forgiveness to myself and others. Allowing myself to change, and better myself. I have been trying to fill my time with productive thinking, and actions that will help better the world. It is truly helping my mental well being and for that I am very proud of myself! :)

Nobody will probably answer, but I’d love to hear what other people are proud of themselves for!

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What do I need right now?

You know I thought about this quite a bit, and I have conflicting feelings. This lockdown has really put a twist on what I am feeling. My “normal” day before the lockdown was going to classes everyday, independence to go around campus alone in my wheelchair, being around my best friend everyday, and seeing my other friends more often than I am now. 

All of this to online classes, living with my parents and brother, only seeing them and never leaving. No wheelchair to feel some sense of independence. I love my family, but I have no way of getting out. I’m high-risk, so just going to the store is something I can’t do. That can be something that feels very isolating whether I am surrounded by people or not. 

Almost a year ago I was diagnosed with anxiety and depression. This was expected, but nonetheless a hard pill to swallow (No pun intended lol). Anyway, I was put on two medications that have really managed my panic attacks and helped calm my nerves. Along with this, I was able to go to therapy at my university for FREE. This was extremely helpful, along with the medication. 

I was able to get many things off of my chest. After my last breakup, it really left me with feelings of insecurity and blame on myself. Won’t speak much on this, but it really took me for a whirl. Along with this and some of my past toxic friendships, It definitely added to my diagnosis. Therapy really helped me with that. Unfortunately, that was stripped along with everything else. I can’t really afford online therapy under these circumstances, so that is adding to the many problems with the lockdown. 

I understand why we have to do this, and it’s frustrating to see people not complying. This doesn’t make it any easier. It is even harder to see people refusing to stay inside, and say “Wellll, some people just have to die. That’s life. Those who are high-risk would be dead in the next 12 months anyway.” Yes, this is a real quote from one of my mom’s idiot facebook friends. It hurts to see that my life isn’t valued by so many people in our country. Along with our president, on so many other occasions. 

I am trying to allow myself to see the positives: Nature is clearing up, people are coming together, acts of kindness are filling my community, etc.

With all of this being said, I need a few things right now. As funny as it sounds, I need isolation. I need time to be alone, and truly be alone with out the stress of being around my family constantly. I need an area to let out my feelings (these prompts will certainly help). I need to recognize the things that are going on in the world, and stop taking it out on my boyfriend. And most of all, I need to give myself the space to feel my emotions without being so cynical of myself. I have been so hard on myself on how I have been feeling and invalidating it. Things in the world are shitty right now, and realistically I need to allow myself the time to grieve the independent life I had a month ago. 

If you’re reading this, I appreciate you finishing it all. I don’t expect anyone to see this, but it definitely gave me the space I needed. ‘Til the next prompt!

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These times during quarantine can be tough!

It can be especially tough on those with disabilities, so let’s talk about it!

Having a disability comes with many things, and sometimes those things mean dependence on others. Being stuck in the house can be isolating, especially for those with care workers. With this quarantine, many people are losing their PCA’s. This means they become more dependent on their family and friends. This can be challenging for a family that gets along, but can be even worse for those who don’t have supportive family members.

PLEASE reach out to those with disabilities and check in, it means the world. Outside interaction is what is keeping us going right now!

(Just check on anyone who you know and care about, it’s important! You may save someone’s life)

For those with disabilities, such as myself, please reach out! I’d love to hear all about you and become friends! :) I’d love for to add to what your own experiences have been as well!

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Donald wants to deport children (such as the child above) who have life threatening illnesses such as cancer, sickle-cell anemia, cerebral palsy, muscular dystrophy and who are receiving treatment in the U.S.

Or in other words, Donald wants to give them a death sentence.

It’s not like he cares about them, he wants YOU to hate them, or their parents.

He doesn’t want you to see them as people, but as objects to hate

That is all Vile Donald has to run on.

Kick Vile Donald out in November, end his hatred

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After an eternity, on a subzero December day in 2019, a treatment called Vyondys 53 (golodirsen), capable of slowing down the progression of my form of DMD by restoring a small amount of a missing protein called dystrophin, was surprisingly approved by the United States Food and Drug Administration (FDA). It was initially denied in August 2019 for a few ignorant reasons. As a result, my life expectancy has possibly changed; who knows, maybe I’ll gain superhuman strength (jk, haha). 

Golodirsen was previously denied due to the infection risks of IV ports and renal toxicity seen in mice using a dose ten times higher than what a human would take; kidney toxicity has not been seen in human studies so far. Many other IV medications are on the market with the same infection risk; the drug itself doesn’t cause an infection, IV mishandling does. After a lifetime of waiting, hell froze over, and on December 13th, 2019, the FDA shocked the DMD community by reversing its decision as a result of an appeal by Sarepta Therapeutics, the drug company, and possibly the petition I started here, which received over 4,000 signatures.

Thank you to the researchers working to cure Duchenne! 🙌

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USMLE Quick Review.

•Ocular albinism; lack of pigmentation in the eye.

•Fabry disease; A lysosomal storage disease causing anhidrosis, fatigue, angiokeratomas, burning extremity pain, and ocular involvement.

•Wiskott-Aldrich syndrome; eczema, thrombocytopenia, immune deficiency, and bloody diarrhea.

Glucose-6-phosphate dehydrogenase deficiency, which causes nonimmune hemolytic anemia in response to a number of causes, most commonly infection or exposure to certain medications, chemicals, or foods. Commonly known as “favism”, as it can be triggered by chemicals existing naturally in broad (or fava) beans.

•Hunter’s Syndrome; potentially causing hearing loss, thickening of the heart valves leading to a decline in cardiac function, obstructive airway disease, sleep apnea, and enlargement of the liver and spleen.

•X-linked agammaglobulinemia (XLA), which affects the body’s ability to fight infection. XLA patients do not generate mature B cells. B cells are part of the immune system and normally manufacture antibodies (also called immunoglobulins) which defends the body from infections (the humoral response). Patients with untreated XLA are prone to develop serious and even fatal infections.

•Hemophilia A, a blood clotting disorder caused by a mutation of the Factor VIII gene and leading to a deficiency of Factor VIII. It was once thought to be the “royal disease” found in the descendants of Queen Victoria. This is now known to have been Hemophilia B (see below).
Hemophilia B, also known as Christmas Disease, a blood clotting disorder caused by a mutation of the Factor IX gene and leading to a deficiency of Factor IX. It is rarer than hemophilia A. As noted above, it was common among the descendants of Queen Victoria.

•Lesch–Nyhan syndrome; neurologic dysfunction, cognitive and behavioral disturbances including self-mutilation, and uric acid overproduction (hyperuricemia).

•Duchenne muscular dystrophy, which is associated with mutations in the dystrophin gene. It is characterized by rapid progression of muscle degeneration, eventually leading to loss of skeletal muscle control, respiratory failure, and death.

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Punished for being sick

I’ve been at my first job for three months I’m just a cashier at Burger King. It’s flu season now and even though I haven’t been officially diagnosed I most likely have acute bronchitis since I’m prone to respiratory illnesses. I missed work today and I will be missing tomorrow as well and letting my manager know all he said was I need a doctors note saying I was sick to begin with otherwise the time I missed would be unexcused. I don’t drive and my actual doctor lives 45 minutes away and it’ll cost me over $40 total to just get to the nearest patient first… the note is so dumb to me a minimum wage job and I’m supposed to get a doctors note every time I get sick. I can’t help that immune system is compromised I can’t help that I have muscular dystrophy. I can’t help that my body is weaker than the average person and ever since I started this job I feel like I’ve been punished for being disabled. Punished for needing a little more help and patience as if I’m supposed to apologize for being sick. I already can’t breathe and now I have to worry about how I’m getting this note.

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During Marilyn Monroe’s last birthday on June 1st, 1962, she attended her final scheduled public appearance. The appearance was at Dodger’s Stadium for Muscular Dystrophy. Marilyn was accompanied on the filed by L.A Angel player, Albie Pearson, who said of her, “I looked at the most famous, yet the loneliest person I ever saw in my life. She was a beautiful shell. I was shocked. She played the part of America sex symbol. She cooed. She posed for pictures. She shook hands and walked off the field. Her smile, no longer required, immediately vanished.”

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Jillian Mercado On Being A Disabled Latina Model: ‘We’re Not Going Anywhere’

Jillian Mercado, who lives with muscular dystrophy and uses an electric wheelchair, scored her first major campaign with denim brand Diesel in 2014. In 2016, she collaborated with Target and was announced as one of three models to be featured in Beyoncé’s merchandise campaign promoting the Formation World Tour. “It’s hard to envision someone like yourself being in such a high position as being an activist or being a model in the industry because you just don’t see it, you know?” Mercado told HuffPost. “I just found a moment within myself where I was just like, if I don’t see it out there, and I know in my heart and my soul that I belong here, and it’s what I love doing and it’s in the industry of fashion, then I have to do something about it. I have to be that change.” 

Check out more of the interview here. // 📷: @nolwencif for HuffPost

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