Patient Voice

The Road to Patient Advocacy in Rare Diseases

Photo Credit: Colleen Plunkett

The road to patient advocacy can be a long haul especially for those living with a rare disease. The waiting time, the unknown and the lack of education can leave patients and their caregivers grasping for even the littlest of information and support from medical communicators, physicians, and the like.

Colleen Plunkett’s son K.E. Plunkett has gone through a tremendous amount of obstacles that have left their fight strong as he inspires many in all that he does. K.E. was diagnosed at the age of 2 ½, although the road to diagnosis started earlier.

 “…He threw up every single day. Finally, when he was 2 ½ and when first diagnosed with what is known as Eosinophil Esophagitis, far and few did not know what it was. The doctor we had was reading old research articles. I was just doing what the doctors said, I was giving him Benadryl every day,” said Plunkett. “There was no social media then.” Then finally he was diagnosed, and more people have begun to understand that it was’ two totally different disorders” as K.E. was diagnosed with Autism and Eosinophilic Esophagitis.

When talking with both K.E. and Plunkett there are key elements in which they strive for that are essential. Most notably, the APFED pamphlets were the life saver which are distributed by The American Partnership for Eosinophilic Disorders (APFED). Plunkett stated that they frequented the emergency room at least once a month for a while, and in doing so they always made sure to have the pamphlet on hand to show physicians. “This is what it is,” she said. They had no clue what it was… This is a real thing.”

Plunkett also notes how having social media now plays a huge role as she spends countless hours trying to advocate. “Thank god since there is social media it is easier to talk about.”

When looking to the future K.E. believes more should be done for these silent diseases. “I wish there were movies where the actors have feeding tubes,” as he has been on a feeding tube for the majority of his life, making consuming food difficult and many of which are on the elimination diet.

Fundraising has also played a key role in maintaining patient advocacy and giving voice to rare diseases. “It was through a fundraiser that I helped a friend get diagnosed,” said Plunkett. They also believe news outlets can help advocacy measures.

When looking for resources KE states that APFED, social media and doctors have been where he turns too. “More people are online constantly so because of that people hear more information and have more chances at finding out stuff and make more of a presence on social media,” said K.E.

As for ways in which medical communicators can help both Plunkett and KE would like a greater awareness and exposure to rare diseases, for people to believe you when you talk especially doctors and medicine and to also bring about more public knowledge. Together we can make a difference and it is patient and caregiver stories such as Plunkett and K.E.’s that help to give voice and inspire others to act.

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