#vasculitiscommunity

MOST RECENT

Saturday’s are all about family, but for those who are new to my feed, I want to tell you about my extended family, a community of compassionate people that are truly living up to the hashtag #bethechange - the staff and board members @vasculitisfoundation + the entire #vasculitiscommunity we serve.
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After the loss of my father in 2009 to #wegeners (a type of vasculitis disease, an autoimmune disease that causes inflammation of blood vessels) I was left with an enormous void of which a short Instagram post CAN NOT a lot room for full expression. But, I was also left with a drive to make sure that his loss was not in vain, that his family would turn his passing into a passionate commitment to improve the lives of others with #vasculitis.
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I am a proud board member of @vasculitisfoundation, joining ten other members that are diligently working to best manage the resources and improve the support network of the foundation. This month is #VasculitisAwarenessMonth and we are working to increase awareness + raise funds for new research programs, educational seminars, tech improvements and patient lobbing support. See my feed throughout the day for inspiring men and women that are making a change in the vasculitis + #autoimmunecommunity ++ HOW YOU CAN HELP this worthy cause 🙏.
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In a few weeks, I will finally be able to reveal plans for the launch of the Ilya Peckerman Vasculitis Teaching Fellowship Program, which my family fund in partnership with @vasculitisfoundation + a leading hospital in NYC, will kick off. The goal is to host seminars/CMEs to educate primary care doctors on the early signs of vasculitis, as this is key in improving and saving lives. 💛
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COMMENT: how are you going to be the change? Mama what is your hustle with heart? 🙏💛 Every action has a ripple reaction in the world. Put out those powerful mama vibes, and have a blessed weekend. #victoryovervasculitis #autoimmune #dogooddeeds #dogoodwork

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It is also #vasculitisawareness month (crohnic illness awareness month) and I thought this would be helpful for people who do and don't have it. It tells you the different types you can get, that it is life threatening and that it is rare with no cure. It also briefly tells you exactly how it affects it's host. It also causes iron defiency known as #anaemia . #bechetsdisease is the one I suffer from however I'm still in diagnosis of another type of #vasculitis and if it is affecting my eye. I have an appointment for that soon. #tellafriend #tellafamilymember #shareawareness #getcluedin #knowyourillness #vasculitiscommunity #nocure #invisibleillness #crohnicillness

Both the physical as well as psychological effects of initially being diagnosed with a chronic medical condition and the ongoing implications can be substantial for both the patient as well as their caregivers, family and friends.
But you are not alone! 👫👭👬❤️❤️❤️
​Reading or listening to others that have endured similar circumstances provides some comfort in the fact that you are not alone! ❤️ Make sure you reach out to others when you need to, including friends and family. Join support groups and share your journey on here! ❤️ 💪🏻

May is vasculitis awareness month. ❤️
Link in Bio for a vasculitis foundation awareness video.
In this video you will learn the devastating impact that vasculitis has on patients around the world. ❤️

Vasculitis awareness ❤️

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Keep going ❤️

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Fatigue is common amongst most patients with vasculitis! ❤️

We sure are! ❤️

It's a constant battle! ❤️

GCA is a disease characterised by inflammation of large and medium sized blood vessels. An alternative name for this condition is "Temporal Arteritis" as the blood vessels in the temple area of the head (sides of the forehead) are commonly affected. The giant cells referred to are specific collections of immune system cells seen in the areas of inflammation if a biopsy is performed.

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****I'm reminded, often, that we are all mortal creatures with one life to live. In 1997, I was diagnosed with a very rare disease called Takayasu's Arteritis. Being someone who always feels the need to control everything and learn as much about so much, I found myself obsessing over finding out as much as I could about it. There wasnt even internet like today, no facebook existed ofcourse, a good friend of mine worked for a large corporation where she was able to access the internet and found 1 article on a woman who reversed her Takayasu's through diet and therefore I was able to contact her and learn as much as possible from a diet perspective, remember this is 1997.🙏👍
As a few more years passed and internet became more common especially in residential homes, I searched the internet and found a website all about Takayasu's, it even had a message board where people with the disease, or those who cared for patients could talk to each other. Who else remembers the TARA boards? In any case, it was there that I met an amazing group of people and made many friends. Today I learned that one of those friends, a fellow TAK warrior, passed away. I'm saddened by this loss of a woman with a bright smile and fantastic sense of humor. I will never forget you or your encouragement towards me in my tough times, Julie Yeary. Rest peacefully, my friend.
I am once again reminded of this disease and how so many people are taken away by it and how we so desperatly need more research and ultimately a CURE.🙏❤
#vasculitis
#vasculitiswarrior
#vasculitiscommunity
#autoimmunewarrior
#takayasusarteritis
#weneedacure
#moreresearch
#lostanothersoul
#love
#instagood
#like4like
#likeforfollow
#likeforlike
#followforfollow
#follow4follow
#followme
#followtrain
#followmyjourneytowellness

Managing to go on a night out does take it's toll on us! 🤒

What is Central Nervous System Vasculitis?
Many different types of vasculitis can affect the blood vessels in the brain (called Central Nervous System Vasculitis (CNS)) including the ANCA associated vasculitides, Takayasu Arteritis and Giant Cell Arteritis.

💞💁Hi, this is "ME", My name is Lucy and I started this page, Heal THY self nutrition to share my journey living with a rare autoimmune disease called Takayasu's Arteritis. Its in the vasculitis family of diseases and is thought that the immune system became over active and started attacking the arteries. There is NO cure, only treatments using high doses of steroid medication to reduce inflammation in the vessels and strong cytoxin drugs to suppress the immune system. I believe in the power of NUTRITION and on having a positive mind set. I hope you join me on my journey to wellness and watching me fight this awful disease MY way. I wont give up, I am a survivor💪👊💪 *** Trust the path that has been chosen for you, trust the timing of events, it's amazing how from one day to another things can change.
Love your family, cherish every minute, make the time for those who make time for you.💘💕💞😘
Life is full of valuable lessons and meaning, if you just allow yourself to be awakened, you will see everything just as it is.
Life is beautiful, stay humble, stay grateful.
L.D. 💕
#vasculitisawareness
#takayasusarteritis
#vasculitiscommunity
#vasculitiswarrior
#fightdisease
#keeppositive
#believeinmiracles
#livingwithvasculitis
#holisticnutrition
#antiinflammatorydiet
#eatclean
#wholefoodsdiet
#instagood
#love
#invisibleillnessawareness
#chronicillnesswarrior
#GISTcancersurvivor
#likeforlike
#likeforfollow
#followforfollow
#follow4follow
#followmyjourneytowellness

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