Solace for people affected by Pituitary conditions

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Introduction

This website is part of the "Nip it in the bud" campaign, an educational program aimed at raising awareness of pituitary tumours and related conditions in South African communities with a view to improve time of referral to tertiary healthcare centers, a necessary step towards achieving a successful therapeutic outcome.

Pituitary tumours comprise 10-15% of primary brain tumours with around 25% detected incidentally1. Peak incidence occurs between the third and sixth decade.

Between 1999 and 2008 An overwhelming majority of patients (94%) in South African hospitals presented with some form of visual disturbance. A common and disturbing issue noted was the fact that  patients tended to present very late, often with a history of more than two years of progressively worsening visual acuity.
A significant number of  pituitary tumour referrals in our hospitals are from ophthalmology department, having been through optometrists and general practitioners2.

The second most common presentation was headaches (75%). These varied from raised intracranial pressure type headaches to those localized subjectively behind the eyes. These could be attributed to the mass effect and invasion or involvement of pain sensitive structures such as the dura and blood vessels2.

Some of the underlying reasons include patient apathy, social acceptance of visual deterioration as part of the ageing process, lack of resources, especially with patients from rural areas, thus making it difficult to access basic health care facilities and inaccurate diagnosis and late referrals by primary healthcare practitioners to tertiary centers2. It is our objective at PICOMSA to address these challenges in collaboration with other stakeholders in order to improve the quality of care for pituitary patients.

References:
  1. Kamal Thapar, Edward R Laws. Pituitary Tumours: Functioning and non- functioning, Youmans Neurological Surgery 2004; ch 66: 1170; Elsevier Philadelphia.
  2. KJ Matshana 2010: An analysis of pituitary tumours retrospective study at Chris Hani Baragwanath and Charlotte Maxeke Johannesburg academic hospitals, 1998-2008. 



 

 



Book Review

Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn't have to be. Alone in My Universe, compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body's systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications. Topics include the following: • Handling pre-diagnosis frustration • Dealing with fears of medical treatment and surgery • Managing family issues and work issues • Talking with children • Managing negative energy • Coping with good and bad days • Living life each day With sympathy, empathy, and mutual support, Alone in the Universe shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle. You can get the book on Amazon.

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Our Mission




Pituitary Community South Africa (PICOMSA) is a patient organisation with a mission to ease the burden of Pituitary Disease through promotion of awareness, offering support to people affected and support initiatives aimed at improving the quality of life of pituitary patients including research.

Membership is free and is open to patients, carers and medical professionals.
Let us join hands in the fight against pituitary diseases and become drivers of change in order to make this world a better place.

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