‘A new breed of genetic treatments is giving us hope’

NOSTALGIC Sue Kruk with her two sons, Ziggy (back) and Xavir (front) in 1971
NOSTALGIC Sue Kruk with her two sons, Ziggy (back) and Xavir (front) in 1971
Copperfields Hair Studio, on Hayling Avenue in Baffins. Picture: Google Street View PPP-171118-153719001

Hair salon in Baffins damaged by thieves

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LAST week was Cystic Fibrosis Week.

Here I am in 1971 with my precious sons. Now I’m 70.

When they were diagnosed in 1970, in desperation, I contacted the CF (Research) Trust, and met another Portsmouth mother.

She told me her teenage son (with CF) went to work every day on his moped. She gave me hope and I thank her.

The Trust became a second family. The small local branch has kept going through thick and thin, with coffee mornings, collections, a shop, suppers, garden parties, baking and knitting. You name it, we’ve tried it, had fun along the way, and met wonderful people.

Once we heard, ‘Fibrositis? My gran has that’. But The News backed us, and has continued ever since, publishing factual stories, both happy and desperately sad, about the young CF people of the city.

Since 1970, there have been great improvements in early diagnosis and medication. Babies born today have a rosier future. The CF Trust has developed CF centres of excellence within our amazing NHS.

It has pioneered research. We were told that finding the CF gene was like finding a needle in a field of haystacks.

Now many diseases, including CF, are better understood as the result of the human genome project. Renewing hope, a new era of genetic treatments is in the pipeline.

Sadly too late for many, others – one in three on the waiting list for lung transplant – may die.

Although Cystic Fibrosis is uncommon, the defective gene is carried by one in 25, so in Havant Borough (population 120,760) there are nearly 5,000 carriers.

There are many good causes and I do not detract from any of them. I just want to remind everybody there is information at cysticfibrosis.org.uk and at organdonation.nhs.uk. Please take a moment to look.

Cystic Fibros IS a fight we can win.