ABOUT US

Hereditary Angioedema Zimbabwe is a educational forum to raise awareness on hereditary angioedema and bring together patients, caregivers and the medical fraternity. This page serves as a resource and guide for all who are directly or indirectly affected by this condition or whom may be looking for some guidance towards proper diagnosis of their undiagnosed angioedema.

Patient voices for the longest time have gone unheard and this has led to unforetold misery, suffering and unnecessary medical procedures. Hereditary Angioedema Zimbabwe is part of HAE international patient network for patients living with this rare condition. HAE International (HAEi) is a global non-profit network of patient associations dedicated to improving the lives of people with HAE. It is through these patient groups that we hope to ensure that patients receive proper diagnosis and the lapse in time for diagnosis is greatly reduced for them to be able to realize a more normal and productive life.

Contact

Patrica Karani

  • Regional Patient Advocate – Sub Sahara Africa
    Hereditary Angioedema International (HAEi)
    Founder – HAE Kenya Foundation

Tino Mudarikwa

Benefits of being a member

  • Connect with other patients in the country

  • Become a member of the international patient group, HAEi

  • Receive support as a patients and caregivers

  • Access to knowledge and more information on available medications and management therapies

  • Participate in patient advocacy activities both locally and internationally

  • You become a member of RADDA (Rare Diseases and Disabilities Africa Foundation)

Our Collaboration with RADDA

RADDA is a rare disease organization based in Zimbabwe and is dedicated to raising awareness for patients living with rare diseases and disability in Zimbabwe. Our collaboration with RADDA enhances the voices of patients living with rare diseases and conditions in Zimbabwe.

What is Hereditary Angioedema

Hereditary angioedema is a rare condition that globally affects 1 in 10,000 to 1 in 50,000. Nigeria with a population of 200 million has the probability of having nearly 20,000 patients. This is a life threatening condition with a mortality rate of 30% if left unmanaged or misdiagnosed. This is a genetic condition that runs in families. Very few cases are spontaneous mutations. Therefore, the absence of family history does not rule out the HAE diagnosis.

Hereditary angioedema manifests in large debilitating and disabling swellings that occur spontaneously on the hands, feet, face, throat and genitals, as well as internally in the abdomen which is often accompanied by severe abdominal pain, nausea and at times diarrhea in almost 85% of patients.

Swellings caused by this condition are triggered by any strain or trauma to the body including physical exercises, dental works and surgeries. Other triggers include infections like colds and influenza, hormonal imbalances and at times some medications. A disturbed psychological state of mind like stress, anxiety and even excitement are also known to be triggers.

Hereditary angioedema is caused by deficiencies or dysfunctional C1 inhibitor protein in the blood. There are three types of HAE namely HAE Type I, type II and HAE with normal C1. When carrying out diagnosis a simple C4 level and functionality test accompanied by clinical observations will indicate whether the patient has HAE type I or II. However, further and keen clinical observations are required to identify patients who present with normal C1 and C4 levels. This is according to the World Allergy Organization requirements for management of HAE.

There are both preventative and on demand (emergency) medications with minimal to no side effects that have been discovered over the last 10years and which have been life changing for patients who live with this condition. Patients are now able to realize a normal and more productive life with proper early diagnosis and management of this condition. Medications are best subscribed by a physician who is well versed with the condition. The modern and effective medications include plasma concentrates of C1 esterase inhibitor, bradykinin receptor antagonists and icatibant injections. However, in countries that have no modern medications, fresh frozen plasma for acute attacks as well as androgens like danazol for prophylactic treatment are used to help manage the condition.

HAE International (HAEi) is a global non-profit network of patient associations dedicated to improving the lives of people with HAE.