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Patient Advocacy 

There are many ways to become an advocate and for Ilana, exploring every path to helping patients get the care they need was a long road towards home.  She started her career in advocacy by joining the team at Global Genes, the world's largest rare disease non-profit organization as their managing editor. For five years she interviewed patients about the challenges they faced coping with a new diagnosis, creating their own awareness projects, and partnering with researchers and pharma to find and fund treatment and cures. She used her skills as a publicist and writer to create toolkits, media train, and help patients and their caretakers craft meaningful narratives that would shine the light on their struggle for survival. 

Evolution of Ilana's Advocacy

During her time at Global Genes, Ilana pursued advocacy for herself as well. Growing up undiagnosed meant dealing with the stigma of invisible illness. It created barriers between her and her friends, family, and teachers. By her early twenties, she just wanted to be known for who she was and she wanted to share her life with those she loved in a way that helped them to see her as a person. She also hoped that her words would serve as a way to educate them on her own terms. 

 

She decided to start a blog called Let's Feel Better, where she shared the highs and lows of her diagnosis, treatment, and interactions with doctors and the medical community at large. The blog was meant to help her reconnect with people in her life who hadn't been able to separate who she was from the condition she had. As the weeks turned into months and the posts turned from dozens to hundreds, she found that the blog was working. It was educational, it was humorous, and it was able to help readers connect with her in a meaningful way. While she had hoped that connection would be with family members she had lost connection with-- in actuality, the comments poured in not just from them-- but from past teachers, neighbors, colleagues, and thousands of complete strangers struggling with their own invisible illness. 

The blog became a source of connection for many who were isolated by their disease or new to experiencing chronic illness. Her following grew and grew and eventually her story captured the attention of literary agents and publishers and she was offered her first book deal with New Harbinger. Her book, Surviving and Thriving with an Invisible Chronic Illness was published in 2018 and was a comprehensive survival guide for young adults transitioning to managing their own care and newly diagnosed adults with chronic, invisible diseases.

With the success of the blog and book, Ilana continued to pursue collaborations and contracts with healthcare companies to help them find the right words to reach patients. She took on the role of Director of Patient Advocacy with FDNA (Face2Gene) and consulted with whole genome sequencing labs. She wrote about invisible illness for Cosmopolitan and Marie Claire. In 2019, she took on a new role with WEGO Health as part of their community team, matching patients with ad campaigns for medications across a variety of condition areas including lupus, psoriasis, breast cancer, rare disease, asthma, cancer, endometriosis, cystic fibrosis, epilepsy, hepatitis, HIV, menopause, migraines, multiple sclerosis, and many more. She currently works with Health Union as a Director of Community managing multiple social media campaigns featuring real patients (not actors!)

As an avid content creator, Ilana transitioned from a blogger into an influencer, sharing her words and work across platforms like YouTube, TikTok, Instagram and Facebook. Most notably, her video series of Doctor Conversation, where she acts out interactions between doctors and patients to illustrate how to advocate have become essential education for patients. The majority of her social advocacy is centered on the topics of medical gaslighting and medical trauma. Her viral work once again attracted publisher and she signed a deal for her second book with BenBella Books in early 2023. Her book will be a guide for women on how to defend against medical gaslighting in the exam room. It's slated for released in Fall 2024.

FAQ

Q: Can I hire Ilana as my own personal patient advocate?

A: Ilana is not available to take on individual cases. In fact, her work is intended to reduce the need for professional advocates and to help patients be their own best advocate. Her belief that patients can learn and utilize the skills they need to effectively represent themselves in the exam room is backed by her commitment to make her educational advocacy free and accessible. Her social content is publicly available and her books (both print, audiobook, and e-book versions) are available through libraries nationwide. She also accepts questions via direct message on Instagram.

Q: Is Ilana a doctor?

A: Ilana is NOT a doctor or a medical professional of any kind. Which is why she never gives medical advice. Being a patient advocate means Ilana teaches patients how to represent themselves, collaborate with their healthcare team, and make smart and informed choices about their care.

Q: Does Ilana have her own organization?

A: Currently, Ilana does not have a non-profit organization, though she does serve on boards for different non-profits from time to time.

Q: Does Ilana have a gofundme?

A: Ilana does not have a gofundme or any other fundraising site for herself. If you see something that looks like it's from her, please report it to IlanaWrites@gmail.com 

Q: Is Ilana still accepting stories for her new book on medical gaslighting?

A: While the book is complete and now going through the editing process, Ilana is still accepting submissions of stories through IWasNotHeard@gmail.com for future projects about medical gaslighting awareness. 

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