The IgA Nephropathy Foundation teamed up with the Living Kidney Donor Network to help educate kidney disease patients on finding donations. This education was conducted during the first annual Spark 2020, which was a one-day symposium of patients, caregivers, and specialists who came together to discuss the latest in IgA nephropathy. 

Harvey Mysel is the founder of the Living Kidney Donor Network and a two-time kidney transplant recipient. Mysel found a passion for educating other patients on the kidney donation process and developed an online program, called Having Your Kidney Donor Find You. 

During his live webinar, he discussed important steps in finding living donors, myths and facts regarding donation, different options on receiving a living transplant, and tips for starting your kidney campaign.* 

What are the steps to finding a kidney donor?

• Learn your disease well so you can gain confidence discussing it. Potential donors will have questions and may believe certain myths about donating a kidney. Be able to answer common questions, so you can set the facts straight. 
• Develop your story to help potential donors to connect and empathize with you. Either you or an advocate should be able to tell a brief story in person or on blogs, videos, or other mediums. The story should discuss how a transplant will change your life and what you look forward to doing post-transplant. 

What are common misconceptions regarding kidney donation?

While there are many misconceptions, the common ones Mysel has heard include:

• I need two kidneys to have a normal life.
• I can’t have children after donating a kidney.
• Living donors have to take anti-rejection drugs.
• People with tattoos can’t be kidney donors.
• Someone over 65 years old can not donate a kidney.

What are some basic facts to know about kidney donation?

To help get patients and caregivers on the right track to educating themselves and potential donors, he discussed some important facts to keep in mind: 

• Of the 124,000 people on an organ transplant waiting list, 102,000 of them are waiting for a kidney transplant. Fifteen people from the kidney transplant list die every day. 
• Most kidney transplants come from a deceased donor but living donors have been increasing over the years. Living donors are preferred because survival rates are better; you know your donor and their health history; new kidneys function immediately; and cost savings for Medicare and private insurance.
• Many hospitals require donors to have medical insurance. 

What living donor transplant options are there?

Kidney transplant recipients can receive their kidney from a:

• Compatible relative or non-relative donor, who already knows the recipient
• Non-directed donor, i.e. a person donating a kidney without a specific recipient in mind
• Kidney paired donation (KPD), which comes from transplant centers and national transplant organizations, who work to pair non-compatible donors to other patients with non-compatible donors to help recipients find a match

What are the keys to campaigning for a kidney donor? 

Some important keys are:

• Do not ask someone to donate—tell your story instead.
• Learn about living donations and your condition.
• Send out short updates and education material to friends and family.
• Stay motivated and continue to reach out to people.

How can an advocate help you?

If you find an advocate and educate them on kidney donation and transplantation, your advocate can support and appeal to potential donors on your behalf. They can keep your family and friends up-to-date on your progress and any medical or personal changes. They may also send educational letters and emails with information and articles on your behalf. 

Where can I campaign my story?

Educating people on kidney donation and your story can be done through:

• Newspapers, television, and radio stations
• Schools, churches, reunions
• Letters to an editor of a magazine, newspaper, etc. 
• Social media

*IgA Nephrology Foundation. (2020, Aug. 30). Spark 2020 | Having Your Kidney Donor Find You [Video file]. https://www.youtube.com/watch?v=SFetAzK7xgI