I am starting a series of videos to explain what my life with my chronic illness has been like and want to connect with anyone with similar or different stories :)
I was diagnosed after doing routine bloodwork, I was 33, I’m 43 now. My neutrophil count has always hovered between (.3 to .6) thankfully I haven’t had any illness that landed me in the ER this amazes me considering I had two small children at the time and they went through pinkeye, the flue, strep throat and I have never got it. You speak of the fatigue you felt. I’m the same way and go through it daily. I will wake up with energy, come about 2pm I get weak and sleepy. I drag my butt through the remainder of the day but it’s hard. Anyway it’s nice to hear I’m not alone
@7204Joseph
2 ай бұрын
I am currently going through the same situation with being tired and listless around 2-3pm - I find if I meditate (TM) I get back some of the energy I lost during the day (I'm a vegan and it's challenging with low energy)
@nataliastrnat312
Жыл бұрын
hello Sara! i don’t know if you’ll ever see this message.. I hope you’re well. I wanted to thank you for your videos. I have chronic neutropenia but still don’t know what it’s caused by, as i’m not ready for bone marrow biopsy and ANCA tests are not available where i live. I also have anxiety and depression. anyway… I wanted to thank you because you are the first person I ‘meet’ with this condition. I got tired and terrified of only reading studies and watching conference videos about neutropenia. this is the first time someone talks honestly, openly and spontaneously about it. and i really needed to hear that life does not end here. so thank you! 🙏🏻💕
@souldust7643
3 жыл бұрын
Hi Sara, first of all, thank you for finding the courage to talk about your illnesses and sharing your story with us. Your journey is very similar to mine (it reassures me in a way that I'm "not alone in the world", but it also saddens me to see that other people are going through the same hardships as me). I have different chronic illnesses (including chronic idiopathic neutropenia or auto-immune neutropenia). The hard part for me was that I had to realise that I wasn't "invincible". That I had to "listen" to my body and make sure I get plenty of rest and don't fall sick. It truly changed every bit of my life. It took me a while to adust to this new reality, the extreme fatigue and all, but now I made peace with it. It may sound naive, but while our journey has been filled with pitfalls and angst, I'm convinced that, in the end, it makes us incredibly strong and wonderful people. Wishing you well and sending you good vibes!
@ericalynnekrol
3 жыл бұрын
You are so amazing for sharing your story ❤ Even as someone who doesn't have these illnesses it is so helpful to hear your perspective so we can better understand and help people who do suffer from them. Im so glad you chose to fight and are able to make these videos now!
@saram8344
3 жыл бұрын
You are so sweet! Thanks for being my first to watch it !
@Thorlianna6
3 жыл бұрын
You’re such an inspirational, strong and powerful woman. I’m so glad I know you, we have learned so much from each other and I admire you so so much! ❤️
@saram8344
3 жыл бұрын
You’re the best !!!! I love you so much 🥰
@alexshaw5467
3 жыл бұрын
Sara you are amazing. I never knew the whole story behind this illness and you are so strong ❤️❤️❤️ thank you for sharing your story.
@saram8344
3 жыл бұрын
You’re so sweet !!! Thank you so much !!!
@oldcollin.
3 жыл бұрын
I had autoimmune neutropenia from age 3-10, was the 69th(?) case and I’m struggling with anxiety and depression because of it. I understand everything you’re trying to say. My mom went through 7 doctors before she found the right one. You’re doing such an amazing thing by talking about something that is so important. Thank you so much.
@saram8344
3 жыл бұрын
I have never met or known anyone else with it . Mine was mainly 15 and on and thankfully by 22 I was off neupogen ( hopefully for good !) I have so many crazy anxiety moments because of the unknowns we’ve already dealt with ! Thank you so much for commenting !!! For as little as they could help me I can’t imagine being one of the first
@oldcollin.
3 жыл бұрын
@@saram8344 That would be the worst time to be on neupogen i'm so sorry :( i'm glad i got mine over with since i was too young to understand the severity of it. There was an international neutropenia conference in seattle around 2006/7ish, was able to meet a bunch of people w AIN let me know if you ever wanna talk about stuff going on w depression and anxiety stemming from this. i'm sure we both have experience that could help us find ways to cope meant to say 3-12 in the original post by the way.
@heatherlawless6079
28 күн бұрын
Would you feel comfortable sharing what you neutrophil count was and/is?
@leyakataliliton868
2 жыл бұрын
I am suffering Nutropenia for last 3 year, life is hell😐😑😑😑
@ramonab2029
2 жыл бұрын
Hi Sara M. I hope you'll read my comment. I also have autoimmune neutropenia and also reactive amyloidosis, I don't know if the two diseases are related (if neutropenia triggers aa amyloidosis) but my fatigue is extreme. I'm not on Neupogen, yet
@ambirose7265
2 ай бұрын
Hi Sara! Hope u are very well now...my mother has isolated neutropenia, can u guide how u treat ur neutropenia? How many shots of neupogen u have taken? How long we can use neupogen shots?
@susanramen1615
10 ай бұрын
Hey there, useful video. Which symptoms were improved by gcsf therapy please? If any other than reductions in infections?
@jjohnson9822
2 жыл бұрын
Its caused by bacteria/fungus that triggers the ilness. Auto immune. Cleanse the blood/body to heal. I know sounds harder then it is. But push your body to limits with fitness and regenerate you can do it !! Hope ur ok x
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