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Questions to Ask & Resources to Help


Mental health conditions, such as depression or anxiety, are real and treatable.

You probably have lot of questions about IgA Nephropathy, how to manage it and keep track your kidney health, blood pressure and other health markers. Don’t be shy about asking questions about coping and dealing with the emotions that can come with having IgA Nephropathy. 

For example, it might help put your mind at ease to ask about and better understand when and how often your kidney function will be checked so that you feel confident it’s being closely monitored. Ask what to do if you feel depressed or alone in your journey, or how to deal with the burden it may have on your family and other relationships. 

The answers to many of these questions may allay fears and help you focus on what you can do to manage the condition.

Other questions might include:

  • I’m feeling overwhelmed. What steps can I take to keep my IgA Nephropathy from getting worse? Which should I work on first?
  • How and when will we test my kidney function? 
  • What symptoms should I watch for in-between visits? When should I call you? 
  • Are there other people with IgA Nephropathy and my stage of kidney disease who I can talk to? 
  • What can I do to lower my anxiety and/or get better sleep?
  • How can I explain IgA Nephropathy to other people so they understand what I am facing and why I may look healthy, but sometimes not feel well or up to doing much?
  • Could I benefit from seeing a mental health professional? Is there one you’d recommend for me?
  • Are the things that I am eating making my kidneys worse?
  • How do I best prepare myself for dialysis or a kidney transplant? How will these procedures affect what I can and can’t do?

Additional resources 

Take a mental health test

https://screening.mhanational.org/screening-tools/

Learn mindfulness techniques

https://medlineplus.gov/ency/patientinstructions/000874.htm

Find a mental health professional near you

First, ask your primary care or nephrology office if they recommend someone as they know you best. The American Psychological Association and Psychology Today also have an online tool to search for a mental health professional by type and location. 

www.pyschologytoday.com/us/therapist

https://locator.apa.org

In a Crisis?

If you are thinking about harming yourself or attempting suicide – even if the feeling comes and goes – tell someone who can help or dial 911 in an emergency. 

The National Suicide Prevention Lifeline is open 24/7

  • Call 1-800-273-TALK (8255) or 988 from your smartphone
  • Text the Crisis Text Line (text HELLO to 741741)

Knowing that I’m in control helps; the disease is going to to what it wants, but if I stay informed, do what I’m supposed to, with lifestyle changes and medicine, and follow my health measures and lab results, that keeps me in a good places mentally.

Judy

Read On To Learn More About

Mental Health & Common Stressors

Mental Health & Coping Self-Check & Tips 

Questions to Ask & Resources to Help

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May 14, Sunday: Mother’s Day & IgA Nephropathy Awareness Day

The IgAN Foundation was sparked by a mother’s love and has grown into a community sharing crucial resources and working toward a cure. This day kicks off a week of celebrating the IGA Nephropathy family all week!

May 15, Monday: Mindfulness

IgA Nephropathy can be challenging and mindfulness is an important part of caring for yourself. Take a moment today and implement a mindfulness practice, meditate, or take a few moments in reflection to check in with yourself.

May 16, Tuesday: Share Your Story

On this day, the Foundation will share the video with Warrior stories compiled (submit yours here if you haven’t yet). We encourage you to also share your own photos and videos from moments along your journey!

May 17, Wednesday: Wellness

What are you doing to feel well today? IgA Nephropathy can sometimes make life feel uncontrollable, but there are some things we can control, for example:

  • Enjoyable movement (a stretch, a walk, dancing to a favorite song)
  • Eating food that’s right for us individually
  • Checking in with ourselves
  • Meditating

May 18, Thursday: Thank those who care

Between care teams, care partners, and medical providers, a lot goes into the care that sustains us as we live with IgA Nephropathy. Take this opportunity to express your appreciation to them!

May 19, Saturday: Rally cry

When the IgA Nephropathy Foundation was created, there were no resources to treat IgA Nephropathy. Now, there are 2 approved FDA treatments and many clinical trials in the works. Our community is strong and full of hope— here’s to even more progress in the future!

May 20, Saturday: Celebration! 

We’ll be hosting an in-person celebration (details to come). We’ll miss you if you can’t make it, but please take the time to celebrate however works for you — wearing your IgAN Foundation sunglasses, spending time with loved ones, etc. — just be sure to share a photo and tag us!

References

  • Hall, Y.N., Fuentes, E.F., Chertow, G.M. et al. Race/ethnicity and disease severity in IgA nephropathy. BMC Nephrol 5, 10 (2004). https://doi.org/10.1186/1471-2369-5-10
  • Kiryluk K, Li Y, Sanna-Cherchi S, Rohanizadegan M, Suzuki H, et al. (2012) Geographic Differences in Genetic Susceptibility to IgA Nephropathy: GWAS Replication Study and Geospatial Risk Analysis. PLoS Genet 8(6): e1002765. doi:10.1371/journal.pgen.1002765