My TB Journey - lung - Teresa Rugg and Liz Stapf.pdf · My TB Journey Diagnosed with Active pulmonary TB in 2011 Completed 11 months of treatment in 2012 Experienced side effects

My TB Journey

Diagnosed with Active pulmonary TB in 2011

Completed 11 months of treatment in 2012

Experienced side effects such as:

Nausea, rashes, stomach pain, diarrhea, thrush, fatigue etc.

At the clinic where I was finally

diagnosed

My final sputum sample, much

love for the therapeutic packaging

Common Topics

• Questions and complaints about side effects

• Confusion about diagnosis

• What to expect during and after treatment

• Sharing their diagnosis in the hopes of finding others who are

experiencing the same thing.

• Sharing experiences and looking for support with stigma and

depression

• Questions about self care: diet, vitamins, exercise etc.

January 24 at 10:47pm

Hi guys, my story is that I became sick in November 2016, but only got

diagnosed with active pulmonary active TB and pneumonia in April 2017 after

finally reaching breaking point.

I finally finished treatment in December last year and am finally on the mend!

I guess I was too scared to even look up support groups like this during

treatment for fear of what I might find.

But now on the other side it's so important and validating to know that there is a

whole community here who supports people through their journey back to health.

I'm still struggling with mental health issues as a direct result of being sick for so

long and the feeling of powerlessness that comes with facing this illness, so am

reaching out to gain support from people who have themselves experienced the

isolation that comes with a severe illness.

Sending out love and positive vibes to everyone on their journey

• There is no shame about complaining when things are tough!

Expressing feelings, even the negative ones, is a vital part of building a

better response to TB.

• Shame and stigma are a difficult part of the TB journey.

Reminders (even though it may seem obvious) that the patient's

health; both mental and physical are important, not just killing off the

contagion, send an empowering message.

• TB can effect every aspect of a person's life.

Continued recognition of this empowers the patient and helps to fight

the isolating tendencies of this disease.

Empowering Messages for Patients:

TB Photovoice: Online Support and Resources

Teresa L. Rugg

TB Photovoice, Director

Snohomish, WA, U.S.

[email protected]

TB Photovoice

Nakuru, Kenya

TB Photovoice Project

Themes included:

• Treatment side effects

• Importance of family support

• Access to food

• Persistence

• Impact on work

See all of these stories and photos on Facebook, TB Photovoice

Main Issues Discussed on the TB Voices Forum 2017

• Celebration/acknowledgement of milestones in life and in their treatment

• Practical tips to keeping up good nutrition and finishing treatment

• Supporting the daily grind of TB treatment

• Exchange of ideas concerning side effects of TB treatment

• Facing the stigma together

• Advocacy opportunities

• Education sharing

So, here I am climbing a moderately sized mountain a month ago (5 months post treatment).

I felt so energetic and strong and was no slower than my fit companion.

For those still suffering, you will get better and feel like you once did. Stay strong. XXX

Ifraf – TB Survivor

TB Photovoice: Resources

Postcards for patients and families, contact Teresa, [email protected]

Online Resources:

• www.tbphotovoice.org

• TB Voices Forum on Facebook

• TB Photovoice Facebook page

TB Photovoice Media Response Program

Since mid-2016, we have:

• Published more than 100 online educational

comments to over 75 U.S. news outlets

• Written dozens of Letters to the Editor and

contacted journalists covering TB cases

• Contacted dozens of Health Departments

providing support materials, including

postcards that share about our TB Voices

Forum and TB Photovoice website.

TB Support Platforms to Share

• TB Support-Private Community on Facebook (FB)

• TB Support Group - Advice, Sharing and Info about Tuberculosis on FB

• TB Voices Forum on FB

TB Photovoice: Online Support and Resources

Teresa L. Rugg

TB Photovoice, Director

Snohomish, WA, U.S.

[email protected]