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We are all RARE 💙💛
We are a rare disease community made by people just like you. Get support & insights from real people living with rare disease.

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part one of what has easily been the most difficult, trying, painful year thus far.

I don’t even want to look back.

and no, I won’t follow that statement up with some toxic positivity, or loosely knit words about how things were ‘still good’ in spite of everything -

because they just weren’t.

this year -

the one that I barely made it through.
the one that some days, I honestly didn’t think I was going to.
the one that I don’t know how I made it through.
the one that I still don’t know how I’m going to make it through.

but make it through, I will.
(that’s what I’m good at, after all).

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#ehlersdanlossyndrome #ehlersdanlos #hypermobileehlersdanlossyndrome #ehlersdanlossyndromeawareness #chronicpain #chronicillness #invisibleillness #painawareness #disabled #disability #geneticdisease #invisibleillness #gastroparesis #complexregionalpainsyndrome #ankylosingspondylitis

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I started donating blood in high school. At some point, much later into adulthood, I started donating plasma and platelets too — a few simple ways of giving back that came to halt when I was diagnosed with Dermatomyositis.

Today I got to get back into the donor chair. For what will be without a doubt the most important donation I’ve ever given.

There are currently no on-label medications for the disease I’ve been fighting for the last 17 months. The short list of medications I’ve tested out were all created for other diseases and conditions and through trial and error, were found to work “well” for Dermatomyositis. I’m using air quotes around well because, as I’m sure you’ve seen through my experience, there’s plenty that could still be improved. Rare disease patients like me are often forced to accept the bare minimum because in most cases, the funding and/or interest doesn’t exist to create specialized medications.

That’s why I’m in Philadelphia. Right now, research is being done in hopes of developing the first-ever medication to treat Dermatomyositis. And it feels surreal to say I will have played a very small part in it.

This winter, a nurse came to my house to draw blood — so many vials, like 14!!!! — and after some testing, I was asked if I would consider coming to Philadelphia to donate plasma. I had to reschedule my initial trip in May because I was too weak to travel but was over the moon when, for what feels like the first time in forever, my body decided to cooperate.

I’ve got another donation scheduled for Thursday before flying home to hop right back into my treatment plan — back to infusion and milkshakes bright and early Monday morning. In the meantime, I’m enjoying hotel air conditioning and getting to see a few friends while I’m on the east coast. ❤️

#dermatomyositis #dermatomyositisfighter #chronicallyawesome #chronicallyill #knowrare #raredisease #rarediseaseawareness #philadelphia

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All Good Things - my first book - was featured in an article written by @knowrare this month. Can’t wait for you to read it!

https://knowrare.com/blog-v2/erin-paterson-huntingtons?fbclid=IwZXh0bgNhZW0BMQABHcH0qB0OdjE6jD3kwZ6fLn3VAIeOhD2suGpGcaeEMklC43w3iR7OA1iDKQ_aem_Ac0wk-bLUT32Hx0ob69HIUuouejIorQwCqmQMTEU-jyVXVFRSz_LdsHAkSAr4zn9Upg

#HDhero #HDBook #lemonadepressbooks
#huntingtonsdisease #huntingtonsdiseaseawareness #hdcommunity #hdfamily #curehd
#hdwonttameme #neurologicaldisorder #HDwarrrior #genetics #HDstories #HDanthology #raredisease #wearerare #medicalstories #advocate #hdadvocate

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I am grateful to mark my first year with Thrive Rare by sharing a few highlights and extending heartfelt thanks to everyone who has graciously allowed me to share my journey on their platform. It's been an incredible privilege to connect with people worldwide and inspire them to embrace their uniqueness. Your belief in my story means the world to me. Here's to many more years of growth and empowerment together! 🙏🌍❤️ #ThriveRare #Gratitude #EmbraceYourUniqueness #Empowerment #Inspiration #Journey #Thankful #GlobalCommunity #PersonalGrowth #CelebrateSuccess #Motivation #SharingIsCaring #SpreadLove #DreamBig #AchieveMore #CommunityLove #PositiveVibes #SupportEachOther

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I am grateful for the incredible journey of building and nurturing communities that inspire and uplift each other. I am proud to be a rare influencer for @TheKnowRare and a feature family blogger for @CourageousParentsNetwork, where we support individuals and families facing rare disorders like mine. Together, we can achieve so much more than we ever could alone. I am thrilled to collaborate and spread the message of embracing uniqueness on my #ThriveRare journey. #CommunitySupport #RareDiseases #EmbraceUniqueness

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Jumping into Know Rare felt like finding my tribe in the vast world of rare diseases. It's this incredible blend of support, research, and real stories that just click. Being a rare influencer and contributor here, I’m not just ticking boxes; I’m part of something that’s close to my heart, making sure nobody feels like they're walking this road alone.

Nina, the powerhouse behind Know Rare, has been amazing. She’s been there for me, cheering me on and pushing me forward on my own path as an author and advocate. It feels like giving back to this community through Know Rare is just the right way to pay it forward, sharing that same sense of belonging and hope that I've been lucky to find here. It’s about being real, being there for each other, and sharing the journey, no matter how rare it might be.

#RareTogether #KnowRareImpact #UnityInRare #ChangeMakersUnite #JourneyInWords #StrengthInCommunity #BeyondRare #TribeFound #InspirationByNina #HeartfeltGiveback #VoicesOfRare

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I’ll be sharing posts throughout the day celebrating/recognizing World Rare Disease Day.

GRATITUDE FOR THE MASSES
To all the zebras, their families, caregivers, advocates, geneticists, researchers, and clinicians dedicated to increasing our knowledge and understanding of the ~7,000 rare diseases impacting over 300 million people in the world:

The advocacy, work, and support you give is essential to improving the quality of life of patients like me and gives hope to a future where rare diseases are funded and researched equitably. Hope for a future where the patient no longer has to assume the role of “Researcher”, “Doctor”, “Scientist”, “Advocate”, “Lobbyist”, “Social Worker”, “Case Manager”, etc. in addition to fighting the daily battles of chronic illness. Hope of a future where diagnosis, treatment, and care are just as accessible for those with unknown/rare conditions as they are for patients battling more mainstream illnesses.

If you know a rare disease patient, I encourage you to talk about the not fun things, the uncomfortable things… educate yourself on their condition, check in and reach out often, let them know you see them and their fight. Learn what to say and what not to say to a chronic patient. These simple things things will significantly improve their quality of life and make their journey feel a little less lonely, I promise.

Happy World Rare Disease Day, zebras 🖤🤍
#rarediseaseday #rarediseaseday2024 #chronicillness #nord #geneticalliance #gard #knowrare #bhdfoundation #ehlersdanlossociety

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This is the most vulnerable I’ve ever been on social media. For me and for every patient taking Prednisone, read below why I haven’t been able to show my face here for a while.

CORTICOSTEROIDS: A LOVE/HATE RELATIONSHIP (full story at the link in bio)

I’m still the same Krystel.
Last December, I was diagnosed with Myasthenia Gravis and rushed to the ICU for having a crisis. One of the meds I was started on were the steroids called Prednisone.
The doctors called it “the magic drug” and had me starting on a high dose to get me strong enough for surgery.
Oh it was magic alright!
3 months later, I was shocked when I looked in the mirror. I had ballooned up. I was unrecognizable TO MYSELF. I can’t even explain how hard it was, especially for a former athlete like me. I wanted to disappear.
I was still recovering and had many complications so hearing “Why don’t you go to the gym?” or “Oh no, is it because of the meds?” really hurt.
For months I stayed in my own bubble; angry, broken, hopeless, while still coping with everything I went through.
THAT’S what it’s like to be on Prednisone. And there’s more…

Anxiety, unwanted hair growth, sweating buckets, stretch marks, acne, crazy appetite.
WHAT IS SLEEP?

I’m sharing my journey hoping it will not only touch fellow warriors, but also their caregivers, friends and family.
I want them to know how much we silently go through. Getting diagnosed with a chronic illness is hard enough to accept. We’re also grieving our old life while monitoring and living with all these side effects. Hearing bad comments or being body-shamed doesn’t help us stay strong in our already difficult road.

Now 10 months into this, Prednisone and I still don’t get along. I hate it but I also love it because in a way, it saved my life.
I was supposed to be off of it soon but a few symptoms came back and well… we’re still together! So I’m done hiding.
My body endured so much this year, the least I could do is be proud of it! 
Life doesn’t stop for anyone, so don’t stop enjoying it! I know I won’t.
Now get out of your bubble, stay #MGStrong!
PS: Reach out if you ever need to vent, it feels good to talk to someone going through the same!

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I want to express my heartfelt gratitude to Nina Wachsman of Know Rare, a remarkable individual and fellow author who has provided me with invaluable support. Nina's unwavering belief in my story of hope has meant the world to me, and I am truly grateful for her assistance in sharing my blogs and book with a wider audience.

Not only has Nina been an incredible advocate for my work, but she has also been a source of guidance and advice during the early stages of my writing journey. Her support and encouragement have been invaluable, and I appreciate the time she has taken to help shape my book.

I also want to take this opportunity to highlight Nina's own literary achievement, "The Gallery of Beauties: A Venice Beauties Mystery." If you enjoy mystery books, I highly recommend giving it a read. Nina's storytelling skills will captivate you, and you'll find yourself engrossed in the intriguing narrative. Available on Amazon!

Once again, I extend my sincere thanks for her unwavering support & encouragement. Her contributions have made a significant impact on my writing career, and I feel fortunate to have her on my new journey as a debut author.

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Read my first ever blog post at the link in my bio! ❄️❤️‍🩹

#Repost @knowrare
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"I was twenty-six years old, a filmmaker, leading a totally normal and healthy life, until I was diagnosed with myasthenia gravis. My name is Krystel El Koussa, and this is my story.⁠
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It is definitely not easy living with any chronic illness, let alone myasthenia gravis, the snowflake disease. ❄️⁠
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Every day is different. One day there are fewer symptoms, the next day a lot of symptoms, and some days no symptoms at all! You never know, you just have to live day by day. I learned to be patient with myself, with my body. ⁠
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Being newly diagnosed, I’m slowly finding a new rhythm in my life while still recovering from the surgery and other complications I had. Many of the medications that I’m taking have intense side effects that also require monitoring.⁠
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The most important part of my recovery, I would say, is taking care of my mental health. Being strong enough to handle the lows and realizing that some days might not be as good as others, but still having the motivation and hope that we, chronic illness warriors, can still lead relatively normal lives. We just need to be patient and understanding with our bodies and supportive of one another."⁠
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🔗 Read the full story "Share your Rare: Krystel El Koussa" on The Know Rare Blog! (link in bio)⁠
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#myastheniagravis #myastheniagravisawareness #mgwarrior #mgwarriors #butyoudontlooksick #autoimmunedisease #raredisease #rarediseaseday #rarediseasewarrior #rarediseaseawareness #mgstrong #clinicalresearch #clinicaltrials #KnowRare

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🌟🙏 The support and interest I have had in Thrive Rare has been absolutely amazing and deeply appreciated. Tomorrow, I'm thrilled to discuss my debut book with Know Rare! 📚🗣️ These opportunities mean so much to me as I want to share my story of hope, empowerment, and resilience with as many people as possible. 💪❤️

#ThriveRare #DebutAuthor #GratefulForSupport #HopeAndEmpowerment #Resilience #KnowRareInterview #BookDiscussion #Inspiration #MakingADifference #SpreadTheMessage #TouchingHearts #IgniteHope #CreatingImpact

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knowrare Reminder: You Deserve to Take a Break ❤️
Finding balance amidst the challenges of a rare disease can be tough, but taking regular breaks is so important for your overall health and well-being.

Whether it's a short walk, a moment of meditation, or just a change of scenery, taking a break from the daily routine can reduce stress, improve focus, and boost energy levels.

How are you practicing self-care this weekend?

Let us know in the comments below. 👇

Myasthenia Gravis awareness, keep it in mind, heart and spirit. Help spread awareness and follow me @myasthenia.pt.fam.friends on Instagram and we can spread awareness together.
I am also on:
Twitter:
https://twitter.com/jmwilliams801
Facebook Support Group:
https://www.facebook.com/groups/myasthenia
Facebook Page:
https://www.facebook.com/Myasthenia.Gravis.Sup.Grp.Pt.Fam.Friends
My hashtags are
#mg_pt_fam_friends
#mg_club_of_snowflakes
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#caregiver
#myasthenia_daily_outlook
#caregivers
#conquermg
#knowrare
#mgandme
#mgholisticsociety
#mgstrong
#miasteniagravis
#myastheniagravis
#myastheniagravisawarenessmonth
#myastheniagravisfight
#myastheniagravisfighter
#myastheniagravisfoundation
#myastheniagravisfoundationofamerica
#myastheniagravisstrong
#myastheniagravissucks
#myasthénie
#myastheniagraviswarrior
#myastheniagraviswontstopme
#myastheniastrong
#myasthenie
#миастения
#миастениянепригово
#miastenia
#miyasteniagravis
@mga_heartland @mg_walk @mgstrong.fitness @myastheniaorg @mghope17 @mg_nola @conquer.mg @mgassocofamerica
@knowrare @mgholisticsociety @myawareuk @mgunited_offical @lady.myasthenia @nord_rare
@myasthenia_daily_outlook

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