Ep. 79: Living with Chronic Spontaneous Urticaria
Part of the series: Allergy, Asthma & Immunology Innovations Podcast
This podcast was made in partnership with Allergy & Asthma Network. We thank Novartis for sponsoring this podcast.
LISTEN TO EPISODE 79:
Imagine being so itchy that you’d consider cutting off your skin just for relief. That’s what it can be like living with chronic spontaneous urticaria.
We sit down with Heather, a patient living with chronic spontaneous urticaria, as she candidly shares her experiences from the initial diagnosis to navigating the complex landscape of treatments and mental health support. Her story sheds light on the day-to-day struggles and triumphs of managing CSU, offering hope and practical advice for those in similar situations.
Dr. G unpacks Heather's diagnosis and treatment journey, including antihistamines and Omalizumab. Dr. G also highlights the importance of managing mental health. Kortney shares her experience of itch and, with Heather, discusses the impact of chronic itching on quality of life and how to explain this to friends and family.
What we cover in our episode about living with chronic spontaneous urticaria:
Heather's Journey with CSU: Heather shares her initial diagnosis and the rollercoaster of emotions and challenges that followed.
Anaphylaxis vs. CSU: Understanding the critical differences between these two conditions.
Finding the Right Treatment Plan: The journey to discovering effective medications like antihistamines and the injectable - Omalizumab (Xolair).
Mental Health Support: The importance of therapy and online resources in managing life with CSU.
Management strategies: Heather shares what works for her in managing exacerbating situations.
Advice for New Patients: Heather offers valuable advice for those beginning their CSU journey.
More resources about spontaneous hives:
Chronic Urticaria Management, Resources & Glossary of Terms: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/management-and-resources/
What is Chronic Urticaria: https://allergyasthmanetwork.org/health-a-z/chronic-urticaria/
More information about Omalizumab (Xolair): https://www.xolair.com/chronic-spontaneous-urticaria.html
Episode Heather talks about where she learned to call her condition Lynda: Interview with Tammie about life with mastocytosis https://www.itchpodcast.com/episodes/71-living-with-mastocytosis
Other episodes about urticaria:
We thank Novartis for sponsoring this podcast.
Timestamps
Living with Chronic Spontaneous Hives
01:20 Heather's Journey with CSU: Heather shares her initial diagnosis and the rollercoaster of emotions and challenges that followed.
03:40 Anaphylaxis vs. CSU: Understanding the critical differences between these two conditions.
05:10 After the ER Visit: The allergist visit and Heather's experiences following a visit to the emergency room.
05:50 Itch and Mental Health: The feelings before finding the right treatment plan.
07:46 Working With Your Doctor: How Heather’s allergist helped her with treatments and her mental health.
09:01 No Triggers for CSU: Coming to terms with knowing there are no triggers for CSU.
09:56 Allergy Testing: Why Heather insisted on allergy testing for CSU.
11:02 Mental Health Challenges: The hardships of living with hives and itch—“not a life to live.”
12:12 Finding Proper Medications: Heather’s treatment plan journey.
14:10 Feeling Relief: Heather’s life after starting Omalizumab.
14:40 Living with Itch: Heather talks about living with chronic itch.
16:40 Seeking Mental Health Support: Therapy and online resources.
20:03 Explaining CSU: How Heather explains CSU to her friends, family, and colleagues.
22:05 Advice for New Patients: Heather’s advice to someone at the start of their CSU journey.
