Pompe Disease

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    Hey everyone! :) I would be grateful for some help from real peeps that UNDERSTAND Pompe Disease. I live in such a rural area there is NO support!

    #PompeDisease

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    Treatment must go on.

    Skipping treatment is not an option for me, so here I am at the Cleveland Clinic for my treatment that last for about 6 hours. I was screened coming into the building and if you don’t have an appointment you aren’t allowed in the building. Thank you to all of the staff for taking care of us. #WeCanDoIt #WeCanGetThroughThisTogether #PompeWarrior #PompeDisease #PompeAlliance

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    Rare Disease Week On Capitol Hill

    Hope the Pompe Sloth and I recorded a video about Pompe Disease and Rare Disease issues. There were over 800 advocates in Washington, DC this week meeting with their representatives to advocate for issues that affect rare disease patients and their families. #rdla #PompeAlliance #everylifefoundation #HopeTravels RareDC2020

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    How Superheroes helped Me When I Had Postpartum Depression

    I am a 43 year old married woman with two sons, and I

    usually write about my life with a #RareDisease and a #Disability, but this

    article is about how superheroes saved my life when I had postpartum

    #Depression.

    Ok so that first statement was a little dramatic, but

    superheroes and comic books helped me to maintain a sense of normalcy and

    provided me with some escape from the depression. But first let me say that I

    did have real heroes in my life at that time; I had a wonderful therapist,

    Social Workers that facilitated my partial hospitalization group, as well as my

    support network of family and friends.

    After the birth of my second child I experienced a serious

    bout of postpartum depression. I was unable to work for almost 3 years, I was

    unable to care for myself and most of the time was unable or not interested in

    taking care of my children. I couldn’t sleep or slept too much, I couldn’t eat

    or ate too much. I experienced suicidal ideation and sometimes just wished that

    I did not exist. I am a Social Worker, so while it was difficult at times to

    say the least, I could see the light at the end of the tunnel. I have seen

    people get better with the help of qualified, dedicated #MentalHealth

    professionals, but I knew it would require a lot of hard work on my part. As a

    result, I did anything and everything my therapist and psychiatrist asked me to

    do, even a few things that my family and I didn’t agree with. During this time

    I was trying to maintain some sense of normalcy in my life and to engage in

    activities that I enjoyed, even though it was extremely difficult at times. As

    much as I had enjoyed socializing with my friends and family, and getting my

    nails done, I no longer had the desire to do these things. I no longer wanted

    to do activities that required me to leave my house, I didn’t want to make

    small talk with people and I didn’t want to lie to my family and friends when

    they asked me how I was doing. So I went back to something I had always loved,

    reading.

    I had a few books that I had been wanting to read so I

    thought now was a good time, I wasn’t working and only left the house to go to

    my partial hospitalization group, so I had lots of time. However, I quickly

    found that my desire to read would be much harder than I had anticipated. I

    would find myself reading the same sentence or paragraph over and over again.

    After 20 minutes of reading I would find that I was stuck in the same

    paragraph, and I couldn’t retain or remember what I had read. At first I just

    thought that I wasn’t interested in the book that I had chosen, so I tried

    reading something different, only to find that it didn’t matter what I read, I

    always found myself reading the same paragraph over and over again. I was

    frustrated and worried that I would never get my mind back.

    It was about this time that the first Marvel superhero

    movie, Iron Man was released in theaters. While I grew up watching superhero

    cartoons on Saturday mornings, I was not particularly excited about this movie.

    I didn’t see Iron Man in the theater, but once I finally saw it I was hooked,

    and saw all of the movies that followed. I suggested to my husband that I

    wanted to try reading comic books, just so I would be able to read something. I

    think my husband was more excited about this idea then I was. My husband has

    read comic books for as long as I have known him, so now he had an excuse to go

    to the comic book store. I started reading Ms. Marvel now known as Captain

    Marvel (she is my favorite) and branched out from there. I know comic books are

    not the Analects of Confucius or The Prince (both of which I have read), but comic

    books are short; the text bubbles are short and to the point and the pictures

    made it easier for me to follow the story line. It was a small step, but all of

    a sudden I was able to read again and retain the information. As silly as it

    may sound these comic books made a small part of my life seem normal again,

    they gave me back some of my confidence and gave me some hope that my mind and

    brain could heal.

    I began to look forward to my trips to the comic book store,

    and enjoyed discussing story lines with the man that owned the store. For the

    first time in a while I was able to engage in small talk with someone and not

    feel like it was forced. For the first time in a while I was able to engage in

    an activity outside of my home that I actually enjoyed.

    Something that seemed so minor at the time is still helping

    me to cope today. I am happy to say that I no longer suffer from postpartum

    depression thanks to the wonderful mental health professionals in my corner,

    however as a rare disease patient, I still struggle with anxiety and depression

    from time to time, and I still enjoy reading comic books. I receive a biweekly

    infusion to treatment my #PompeDisease, and I like to think of it as superhero

    infusion, kind of like Captain America. The idea of a regular person overcoming

    terrible odds to become something more than they thought they could be is why I

    love comic books and superhero stories. At my lowest point when I was

    depressed, I was convinced that my life had no value, that I would never be

    happy again and that I would never be back to myself prior to postpartum

    depression. Now I like to think I have my own superhero story as a person

    recovered from postpartum depression. Now I just need an awesome superhero name.

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    Blinging up my cane

    My cane is blinged up and ready to go! This picture doesn’t do it justice! #PompeDisease

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    Pompe Alliance

    I recently started a patient organization called Pompe Alliance. Our goal is to be a leader in patient services for the Pompe community. Please check us out on Facebook at Pompe Alliance and spread the word. It’s important to the rare disease community that knowledge of our diseases are shared far and wide. Thank you
    #PompeDisease ##PompeAlliance

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    Pompe in the morning

    This is the face of Pompe in the morning. I had to pull out the headband because I am too tired to comb my hair. I did try to put on a little makeup though. ##PompeAlliance ##MovingOnWithPompe ##HopeTravels ##UpYoursPompe #PompeDisease