There are a plethora of benefits for patients using online social media platforms. They help members of the community connect, and share and receive information about all aspects of the disease.
These forums have been designed specifically with readers and patients in mind. The main goal is to encourage readers to connect, ask questions and engage with the PF community. At times, PF can feel like an isolating illness and the PF forum will offer a more concentrated platform to help readers relate to one another.
Some groups have been designed to facilitate connections and encourage discussion among patients who live in similar geographical locations, or for those who fall within a certain age bracket, or for patients who are either pre- or post-lung transplantation.
Below are some examples of the groups we’ve put together to help members of the PF community connect with one another:
Living with pulmonary fibrosis, 50+: Connect with others living with PF/IPF in a similar life stage as you, and discuss issues such as limited mobility and physical therapy, tips and tricks of managing daily life with oxygen, planning for end-of-life care (if applicable), pain management and more.
Canadians living with pulmonary fibrosis: Canadians have noticeable differences in healthcare and thus, in the treatment of pulmonary fibrosis. This group is for Canadian patients or caregivers (immediate family members or spouses) supporting someone living with PF. Join this group to find information on local support groups, discuss treatment options, medical facilities and more as it pertains to Canadian patients living with pulmonary fibrosis.
Pre- and post-lung transplantation: This group is for patients living with pulmonary fibrosis who have been referred to a lung transplant program, or who have received their new gift of life. Many patients know that treatment for PF will include a lung transplant, however, this group is for those in the active stages of pursuing transplantation and those who have received new lungs. Discussions will include medication management, physical pre- and post-transplant care, caregiver support and the many ways that transplant can impact a patient and their family, including the mental, social, emotional and psychological aspects.
Young adults living with pulmonary fibrosis: Connect with others living with PF/IPF in the same life stage as you, and feel connected/less isolated when discussing things such as introducing your disease in a new relationship, intimacy and fertility, facing mortality as a young adult and helping others understand your disease.
Caregivers/spouses: Inevitably, pulmonary fibrosis affects caregivers and spouses as much as the patients, and this group is a unique circle of support solely for them. Join to discuss the emotional, social and physical impact of caring for someone with PF/IPF and explore coping techniques from others sharing the same experiences. Share your strategies, and enjoy the comfort and company of others who know exactly how you are feeling as a caregiver of someone living with PF/IPF.
Groups and discussion topics will continue to be developed and built after the launch of the forum, and we hope readers will start their own discussion topics. If you have any suggestions, please feel free to leave them in the comments section below!
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