Nick Cannon talks about Living with Lupus

Lupus Foundation of America 

Published on Aug 7, 2014Entertainer and TV personality Nick Cannon announced in 2012 that he has lupus. Since then, he has chronicled his battle against lupus through his online videos, in the media and at personal appearances. Nick served as the Grand Marshal for the Lupus Foundation of America’s Washington, DC Walk to End Lupus Now event on April 19, 2014, and after participating in the walk, along with 4,000 other people, he sat down for a brief interview to discuss how he is living with lupus.

You can also find us at Facebook at  Lupus My Invisible Companion. And on Twitter at. LupusMICompanion @LupusCompanion

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Living With Lupus: Part 1 — A Lively Gurl

Hello, its been a couple of days since I have posted. Not to make excuses or anything but I haven’t been feeling all that great. I have said before that I want this to be a real experience with you guys and that this is my life blog. With that being said, Tuesday I went […]

via Living With Lupus: Part 1 — A Lively Gurl

Hey #LupusChicks check out our official #Lupus survey by Maria

13411680_482255401968666_2559520657280019863_o.jpgHey #LupusChicks check out our official #Lupus survey. 
My name is Maria and I am the senior writer at LupusChick 501c3 based in New York. In addition, I am a student researcher at Clark University. While I don’t have Lupus, I have a heart for Lupus patients and have spent the past year working on a proposal to secure a LEEP Grant that would help me research Lupus patients and understand what their needs are and what they feel is lacking in treatment for their disease. Once I secured the grant, I created the following survey, under Clark University and LupusChick 501c3. The results will be graphed this summer and we plan to release the findings via our website lupuschick.com, white paper, press release, etc. Please let me know if you have any additional questions about the survey, which is anonymous – no one would have to enter any personal identifying information. We believe this could be a great source of information to better understand what is lacking in the education of and treatment of Lupus patients. Please click on yes if you agree to take this survey.By taking this 5-10 minute anonymous survey you are helping us better understand the needs of Lupus patients

Survey starts here.https://clarku.co1.qualtrics.com/SE/?SID=SV_1GR5VGTQuoe0Kyx

13 People With Lupus Explain What It Feels Like By Elisabeth Brentano

Lupus is a chronic autoimmune disease that affects 1.5 million Americans alone. Symptoms generally include fatigue, skin rashes, swollen and painful joints, unusual hair loss and a high fever. Nine out of 10 adults with lupus are women aged 15-44, and it’s more prevalent among African American and Latina women. Symptoms can strike at any time, and because of the inconsistencies, the disease is difficult to diagnose — and even harder to understand if you don’t have it.

The Mighty teamed up with the S.L.E. Lupus Foundation to ask their community how they would explain life with the disease to someone who is unfamiliar with it. Here’s what they had to say:

1. “It’s like having the flu without having the flu. I feel sick, exhausted, weak and in pain for 24 hours or weeks. Then it goes away and will hit again whenever it feels like it. It takes so much energy to keep going from day to day. There is a lot of praying, crying and anger due to this disease. I appreciate when I have my good days, and fight through the bad ones because I refuse to give in or give up.” —Neeco Massengale

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2. “It feels like some vague but powerful evil is coursing through my lymphatic and circulatory systems, because it is.” —Trey Turnbull

3. “I feel like a 90-year-old in a 27-year-old body.” —Alyssa Jones

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4. “It feels like you ingested a toxic poison…and the sick feeling doesn’t go away…ever!” —Dawn Gursin

5. “Two words: It sucks!” —Sharon Antonellis

6. “Imagine your worst hangover. Then imagine waking up that way every day, sans party the night before.” — Carie Behounek Sherman

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7. “An exhaustive fight every day.” —Angela Payne Dawson

8. “My immune system attacks itself.” —JoAnna Johnson

9. “It will test every bit of your patience, your mind, body, soul and faith along with the people close to you.” —Danielle Schiren

10. “It’s a bully!” —Mary Copeland

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11. “Do you have any allergies?… Well, imagine that nasty inflammation happening in your kidneys, your lungs, your joints, blood vessels… because you’re now allergic to yourself!” — Candis Stewart

12. “It’s like living with a ticking time bomb; you never know where it will strike next.” — Linda Brown

13. “I just ask them to Google the Spoon Theory. This has helped many of my family and friends to go halfway to understanding.” — Lesley Watkins

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If you have lupus, how would you describe it to others? Let us know in the comments below.

Lupus Awareness- Day 17

Flying Above Lupus

Fact:

Hydroxychloroquine (HCQ) was approved by the FDA for lupus in 1955. HCQ and Corticosteroids like prednisone were the only real treatment for SLE for 56 years. Finally in 2011, Benlysta was approved by the FDA for the treatment of lupus.”
With no two cases of lupus EVER being the same, I can’t fathom how only one FDA approved medication could be the ONLY real treatment for all lupus sufferers? And to think, it was the only source of treatment for 56 years. Now that’s ridiculous! And all the more reason for why it is so important to get to KNOW LUPUS. With applied knowledge, we can find better treatment, find alternative methods and secure a cure.
Sources Include:
Lupus Fact Sheet from Lupus Research Institute, Fun Facts & Stats from LupusAwareness.webs.com/Wikipedia, and the Lupus Foundation of America

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Something to SEA: Learning about Lupus — “sea”ing the good amid the tides of life

Today is World Lupus Day. When I began SoulSEAker nearly a year ago, I vowed to focus only one blog entry a year, on May 10, about Lupus. While I have mentioned it at times, I do not want SoulSEAker to be a depressing place or an outlet to vent about the daily difficulties and […]

via Something to SEA: Learning about Lupus — “sea”ing the good amid the tides of life

Suffering the Silence — Flying Above Lupus

Hey lupies, Be sure to check out this awesome video of two young girls, best friends, who both suffer from chronic illnesses. Ally who battles Lyme disease and Erika who battles Lupus. See how they’ve started a movement and have inspired millions of others suffering in silence to speak up and speak out!

via Suffering the Silence — Flying Above Lupus