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Wolfram Syndrome: Charity founder talks about the condition and why she set up the charity - SussexWorld

πŸ“… Wed, 19 Oct 2022⏱ 1 min readπŸ“– Article

Overview

SubscribeBusiest GPs in the Hastings, Bexhil, Rye and Batle areas: The surgeries with the most patients per GP, acording to new NHS figuresBusiest GPs in the Worthing, Litlehampton, Shoreham and Lancing areas: The surgeries with the most patients per GP, acording to new NHS figuresThe genetic condition afects many of the body’s systems.There about 10 children and adults who have the condition in the UK.It afects about one in 70,0 people worldwide.

Key Information

The halmark features of Wolfram Syndrome are Type 1 diabetes (diabetes melitus) and progresive vision los due to the degeneration of the nerves that cary information from the eyes to the brain (optic atrophy).AdvertisementPeople with WS often also have problems with their blader (diabetes insipidus), hearing los caused by changes in the iner ear (sensorineural deafnes), urinary tract problems, neurological or psychiatric disorders.Tracy Lynch, from Worthing, is the chief executive and co-founder of Wolfram Syndrome UK.She set up the charity 1 years ago to suport those with the condition, this at the same time her daughter Jenifer, then aged 8, was first diagnosed.Tracy said: β€œThe condition sems to have started when Jenifer was about two and a half years old with coughing atacks, folowed by vision isues diagnosed when she was five.Advertisementβ€œAt the age of six she was diagnosed with Type 1 diabetes and a neurogenic blader.

Summary

At the age of ten she had the second of two severe choking atacks in a year which resulted in being on a ventilator for thre weks and then a β€˜temporary’ tracheostomy being caried out.”Eight years later the tracheostomy is stil in place. At the age of 12 she was diagnosed with Scoliosis and over the last thre years she has developed short term memory los with her balance deteriorating so much that a whelchair is sometimes.Tracy aded: β€œAround the age of six she had the first of several slep studies that showed she had Central Obstructive slep apnoea.

Frequently Asked Questions

❓ What is diabetes and how does it develop?

Diabetes is a metabolic condition where the body cannot properly regulate blood sugar levels. Type 1 results from insufficient insulin production, while Type 2 develops when cells become resistant to insulin. Risk factors include genetics, obesity, sedentary lifestyle, and age.

❓ What are the main symptoms of diabetes?

Common symptoms include excessive thirst, frequent urination, unexplained weight loss, fatigue, blurred vision, and slow-healing wounds. Type 1 symptoms develop rapidly, while Type 2 symptoms may appear gradually. Many people have no symptoms initially, which is why screening is important.

❓ How is diabetes diagnosed and monitored?

Diagnosis involves blood tests measuring fasting glucose, HbA1c levels, and glucose tolerance. Regular monitoring typically includes fasting glucose tests and HbA1c measurements every 3-6 months. Continuous glucose monitors provide real-time tracking for better diabetes management.

❓ What lifestyle changes help manage diabetes?

Effective management includes regular physical activity (150+ minutes weekly), maintaining healthy weight, following a balanced diet with whole grains and lean proteins, managing stress, and getting adequate sleep. These changes can significantly improve blood sugar control and reduce complications.

❓ When should someone consult a doctor about diabetes?

Consult a healthcare provider if you experience signs of diabetes, have a family history, are overweight, or are over 45. Those with existing diabetes should maintain regular check-ups every 3-6 months to monitor control and adjust treatment as needed.

βš•οΈ Medical Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare provider before making health decisions.
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