Rare Diseases and Mental Health

“World Mental Health Day reminds me of why a rare disease program was started in Ghana. As a mental health professional, I can relate strongly with the huge mental and psychosocial impact associated with living with undiagnosed, genetic and rare diseases especially in Ghana. Suicide is prevalent among this population. We need a collective effort and strong institutions to adequately provide support to these families”

Samuel Agyei Wiafe, Founder/Executive Director, Rare Disease Ghana Initiative

It’s World Mental Health Day today.
Earlier this year I became part of a family, Rare Disease Ghana Initiative, a nonprofit organization which basically strives to make the world more inclusive of individuals with rare diseases living in Ghana. Working with this group has actually been more of a learning experience for me, and I have come to realize that I know nothing about the subject matter and despite being a medic, I’m a fish-out-of-water when it comes to rare diseases.

One upsetting reality about RD is the time it takes for a patient with a rare disease to get proper/actual/correct diagnosis. It can take an average of 4-8 years before such an individual can even find out that there’s a name for the symptoms he/she has. I believe this ‘diagnostic odyssey’, asides from the obvious toll it would have on the physical body, the mental health of the individual may also suffer. Imagine having symptoms you can’t explain for months, even years, looking/feeling different from other people, going from one doctor/hospital to the other with no resolution nor reprieve in sight?

Don’t stop at that, now imagine finally getting a diagnosis and then being told there’s no evidence-based treatment because the disease is rare that not enough scientific research has been done to produce a cure. Indeed, only 5% of the about 7000 rare diseases have some sort of treatment. Imagine being part of the 95%.

According to Rare Disease UK Mental Health Report for 2018, 95% of respondents have felt worried or anxious, 93% have felt stressed, 90% have felt low, 88% emotionally exhausted, 70% have felt they were at a breaking point. In addition, a proportion patients and caregivers of rare diseases reported to have had suicidal thoughts. Other studies have reported that a great number of individuals affected with rare diseases experience grief, depression and post traumatic stress due to the trauma of delayed diagnosis and delayed treatment. Some studies have also reported that a portion of individuals impacted by rare diseases face some interpersonal difficulties and other range of psychiatric disorders. In our part of the world, unknown diseases are highly stigmatised and are mostly confronted with negative superstitious and metaphysical beliefs which worsens the mental health of the families affected.

Yes today is World Mental Health Day, not Rare Disease Day but I choose to piggyback on this and draw attention to Rare Diseases and their mental health relevance.

For more information follow/visit us
LinkedIn: Rare Disease Ghana Initiative
Website: www.rarediseaseghana.org
Twitter: @RareDiseaseGh
Facebook: Rare Disease Ghana Initiative
Instagram: RareDiseaseGh

Relevant Readings

https://ojrd.biomedcentral.com/articles/10.1186/s13023-017-0591-7

https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf

https://www.raredisease.org.uk/wp-content/uploads/sites/7/2018/07/living-with-a-rare-condition-the-effect-on-mental-health-pdf.pdf

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0211343

About Author

My name is Dr. Damilola Okusaga and I’m a Rare Disease Advocate. My interest area is on the Mental Health of Rare Disease Families.

Email: [email protected]

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