Bozan

In 2022, the Social Well being Community partnered with a number of implausible affected person leaders to create impactful social media campaigns. As a part of this partnership, we wish to spotlight those superb folks’ advocacy paintings.

Tanya Freirich, Lupus Affected person Chief

Tanya combines her interest as a registered dietician nutritionist with advocating for lupus. Navigating her personal lupus prognosis, she discovered that way of life and nutritional adjustments helped her set up the illness. Tanya loves connecting with others within the lupus group and offering training about dietary give a boost to. She enjoys attractive in more than a few techniques via writing, talking, and social media.

Tanya says, “I’m hoping to proceed to succeed in the folks which are fascinated with residing higher with lupus and lend a hand them!” Tanya advocates as The Lupus Dietitian.

Website online: https://www.thelupusdietitian.com/
Instagram: @thelupusdietitian
Fb: https://www.fb.com/TheLupusDietitian
TikTok: @thelupusdietitian

Devin Garlit, A couple of Sclerosis Affected person Chief

Devin was once recognized with more than one sclerosis (MS) when he was once in school. Devin was once aware of MS, as his grandfather additionally lived with the illness. He had noticed the lack of knowledge for MS sooner than his personal prognosis. Devin sees his advocacy paintings so to lend a hand others by way of sharing his tale.

He not too long ago collaborated with Wonder Comics at the Darkhawk comedian books, providing steering on what lifestyles would appear to be for a superhero with MS. He advised us, “I were given to talk about my lifestyles with MS behind probably the most problems. That was once an unbelievable alternative for me and everybody with MS.”

MultipleSclerosis.web writings: https://multiplesclerosis.web/writer/dev71

Natalie Hayden, Crohn’s Illness/Inflammatory Bowel Illness Affected person Chief

Natalie stored the primary 10 years of her Crohn’s prognosis quiet sooner than entering into advocacy. She explains, “I determined it was once time to open up and get started being vocal about my adventure so I may just make the enjoy much less daunting and setting apart for others.”

Navigating 3 pregnancies with Crohn’s, Natalie brings visibility and give a boost to to others taking into account being pregnant and parenting with Crohn’s. She makes use of her journalism storytelling talents to percentage her adventure with others. She values the numerous connections she makes with the Crohn’s group via social media. Natalie advocates as Lighting fixtures Digicam Crohn’s.

InflammatoryBowelDisease.web writings: https://inflammatoryboweldisease.web/writer/natalieannhayden
Website online: https://lightscameracrohns.com/
Instagram: @natalieannhayden
Fb: https://www.fb.com/natalieasparacio/
Twitter: @nataliesparacio

Jenn Heater, Migraine Affected person Chief

When she left the team of workers because of her continual migraine and trigeminal neuralgia, advocacy was once a lifeline for Jenn. She discovered new alternatives and objective in serving to the ones with migraine really feel much less by myself. Jenn frequently wears migraine-related shirts or buttons, which function dialog starters. She works as a volunteer with the e-newsletter “My Power Mind” and is concerned with RetreatMigraine.

Jenn isn’t afraid to be truthful about her illness and publicly recognize the dangerous days. She says, “I’m really not shy about posting how I think when I’m hurting – I believe it’s crucial a part of advocacy. It’s k not to really feel k and display what continual sickness in point of fact seems like.” Jenn advocates as Leader Clinical Oddity.

Weblog: https://medicallyodd.com/
Instagram: @chiefmedicaloddity
Fb: https://www.fb.com/MedicalOddity
Twitter: @medical_oddity

Linda Hoetger, Prostate Most cancers Affected person Chief

Linda’s lifestyles shifted when her husband won an competitive prostate most cancers prognosis. She went from being a spouse and mother to a spouse, mother, and caregiver. Linda felt stunned by way of her lack of expertise about prostate most cancers. She started her advocacy adventure to lend a hand lift consciousness.

Linda created Petey the Prostate, a mascot constituted of a walnut – the dimensions of an ordinary prostate. Petey is a useful visible for discussing prostate most cancers. She and her husband lobbied Ohio lawmakers, and Ohio turned into the primary state to provide ZERO The Finish of Prostate Most cancers license plates! She advises, “Talk out of your center about your adventure.” Linda advocates as Petey the Prostate Crusader.

Weblog: http://peteytheprostatecrusader.blogspot.com/
Instagram: @peteysmom09
Fb: https://www.fb.com/linda.dickeyhoetger

Stephen Huff, Lung Most cancers Affected person Chief

Stephen was once 29 when he was once recognized with degree IV non-small cellular lung most cancers. He found out the overlook in lung most cancers training and consciousness because of the belief that “smoking reasons lung most cancers.” Stephen started his advocacy to switch that belief. His advocacy efforts led him to discovered a nonprofit, the Huff Venture, which is helping to fund more than a few lung most cancers tasks.

In all his paintings, Stephen makes a speciality of representing and empowering the ones with lung most cancers. For him, “beating most cancers isn’t essentially being cancer-free. It’s no longer letting most cancers scouse borrow any treasured moments.” Stephen advocates as The Huff Venture.

Website online: https://www.thehuffproject.org/#/
Instagram: @thehuffproject
Fb: https://www.fb.com/TheHuffProject
Twitter: @thehuffproject

Caroline Johnson, Metastatic Breast Most cancers Affected person Chief

Caroline was once recognized with degree III breast most cancers sooner than her fortieth birthday. Already serving as an suggest for her son with particular wishes, she translated the ones talents to her personal well being adventure.

After finishing most cancers therapies, Caroline based a nonprofit referred to as Twisted Red. She sought after to handle the gaps she noticed in analysis investment for metastatic breast most cancers (MBC). Twisted Red is helping to beef up get admission to to deal with MBC via training and advocacy. Caroline loves her advocacy paintings, because it provides her “a possibility to lend a hand others and be informed from others as neatly.” Caroline advocates as Twisted Red.

Website online: https://www.twistedpink.org/
Instagram: @twistedpinkorg
Fb: https://www.fb.com/twistedpinkcharity
Twitter: @curetwistedpink
TikTok: @twistedpinkorg

Maggie Kudirka, Metastatic Breast Most cancers Affected person Chief

Maggie was once a 23-year-old ballerina with the Joffrey Live performance Staff in NYC when she was once recognized with degree IV MBC. She started her advocacy adventure to lend a hand others be informed extra about MBC. Maggie combines her love of ballet and advocacy, giving grasp ballet categories and speaking to younger dancers about her adventure with MBC. She has additionally participated in dance advantages and spoken on behalf of advocacy organizations.

Maggie affirms the significance of balancing advocacy with self-care. She says, “It may be arduous to suggest, so it’s alright to take a step again and concentrate on your self.” Maggie advocates as The Bald Ballerina.

Website online: https://www.baldballerina.org/
Instagram: @baldballerina
Fb: https://www.fb.com/BaldBallerina

Lisa Moran, Lung Most cancers Affected person Chief

Lisa’s lung most cancers prognosis as a non-smoker opened her eyes to the misconceptions of the illness. After the preliminary surprise of an inoperable, terminal degree IV lung most cancers prognosis, she channeled her power into instructing. Lisa writes and speaks about her adventure with lung most cancers. She advocates on the native and nationwide ranges for expanded investment and consciousness.

If she may just communicate to herself on the time of prognosis, she would percentage this knowledge: “It’s a day by day struggle. However it’s going to turn out to be monthly and year-to-year. Lengthy-term survival is imaginable, and it’s going to occur for you.” Lisa advocates as Peace Lungs and Happiness.

LungCancer.web writings: https://lungcancer.web/writer/lisamoran
Weblog: http://www.peacelungshappiness.org/
Instagram: @plh4lisa, @cookiedemartini
Fb: https://www.fb.com/lisa.stanafordmoran
Twitter: @plh4lisa
YouTube: https://youtube.com/channel/UC6B56U8XtYOIzk0vvD6e8Bw

Randy Patrick, A couple of Sclerosis Affected person Chief

Speaking with others was once essentially the most useful factor for Randy after his MS prognosis. Social media had a profound impact on Randy’s MS adventure. Connecting and receiving give a boost to from others is helping to stop loneliness and isolation. He sees his advocacy adventure as “bringing the group in combination and making the affected person voices heard.” Randy advocates as Will have to Forestall MS.

Instagram: @must_stop_ms
Fb: https://www.fb.com/MustStopMS
Twitter: https://twitter.com/MustStopMS
TikTok: @muststopms

Weekly non-public team chat, Mondays at 7:00 PM EST:
https://www.fb.com/teams/813774555344665
or on Twitter the use of #ChatMS

Susan Rahn, Metastatic Breast Most cancers Affected person Chief

Susan’s MBC prognosis got here de novo, with metastasis to her ribs and backbone. Advocacy gave her a voice. She now writes and blogs throughout more than one platforms, serves on advocacy forums, and items at meetings for MBC. She even had the chance to be a part of an advocacy tale/video for Novartis, filmed in NYC.

Susan says, “I wish to know I helped make a distinction, that I channeled my anger and frustrations relating to this illness in a favorable method that may lend a hand the ones recognized lengthy after I’m long gone.” Susan advocates as Stickit2Stage4.

AdvancedBreastCancer.web writings: https://advancedbreastcancer.web/writer/susanrahn
Website online: https://stickit2stage4.com/
Instagram: @stickit2stage4
Fb: https://www.fb.com/stickit2stage4
Twitter: @Stickit2Stage4

Rick Redner, Prostate Most cancers Affected person Chief

Following his prognosis and a success remedy of prostate most cancers, Rick and his spouse, Brenda, struggled of their marriage. He says, “The devastating high quality of lifestyles problems following remedy for prostate most cancers are hardly mentioned. Males and {couples} want give a boost to!” This difficult length after most cancers remedy turned into the catalyst for his or her joint advocacy.

In combination, Rick and Brenda co-authored two books about their adventure: I Left My Prostate in San Francisco, The place’s Yours? and The entirety You By no means Sought after to Find out about Erectile Disorder and Penile Implants: Finish Your Silence, Unhappiness, Struggling, and Disgrace.

Weblog: https://whereisyourprostate.blogspot.com

Fb:
#1. A Fb web page for pre & publish surgical procedure:
https://www.fb.com/pg/whereisyourprostate/about/

#2. A Fb web page for males taking into account penile implants:
https://www.fb.com/teams/penileimplants/?ref=percentage

#3. A Fb web page for other folks dealing with ED:
https://www.fb.com/teams/1183346195018101/

#4. A Fb web page for Christians dealing with most cancers:
https://www.fb.com/christianscopingwithcancer/

Boards:
Pre-surgery Discussion board:
https://presurgery.freeforums.web/

Publish-surgery Discussion board:
https://postsurgery.freeforums.web/

Candice “CJ” Walker, Kind 2 Diabetes Affected person Chief

CJ’s sort 2 diabetes prognosis felt lonely and complicated. She lacked the sources to deal with this new truth. She started her advocacy adventure “to empower and inspire others on their continual and autoimmune sickness trips, so that they wouldn’t have to head via their trips by myself.”

CJ makes use of her love of writing to suggest for diabetes. Social media opened an international of probabilities for attractive and sharing her tale. CJ advocates as The Genetic Diabetic.

Type2Diabetes.com writings: https://type2diabetes.com/writer/thegeneticdiabetic
Weblog: https://thegeneticdiabeticblog.com/
Instagram: @thegeneticdiabeticblog
Fb: https://www.fb.com/geneticdiabetic