Jewish Health
Feelings about diagnosis
People told us their experiences being diagnosed, including their feelings about their diagnosis and how it affected them.
Cancer
Several women we spoke with who were diagnosed with breast cancer or ovarian cancer talked about feeling 'numb' and 'shocked', and a few felt angry and asked, ‘why me?'
Karen said 'you never in a million years think it’s going to be you'.
Sheila’s mother had survived breast cancer, which gave her confidence that she too would survive it, but she still felt very worried.
David felt 'diabolical' when he was diagnosed with multiple myeloma.
Karen was unaware that Ovarian cancer was prevalent in Ashkenazi Jewish women and was shocked when she was diagnosed with it.
Karen was unaware that Ovarian cancer was prevalent in Ashkenazi Jewish women and was shocked when she was diagnosed with it.
So, you know, it’s a shock. You never ever in a million years think it’s going to be you. And I didn’t know until I got it and started hearing that this one’s got it, and that one’s got it. People that my friends know, you know, I wasn’t aware that it was actually quite prolific in Ashkenazi Jewish people. I just, I just you wouldn’t know. No ideas. Never had been sent anything about it or… I wasn’t even aware of the symptoms. You know, had I been aware of the symptoms and I might have been a bit more pushy at my original doctors, but I certainly would have been a bit more concerned at my new doctors, but because I wasn’t aware it was masked by the fact that I had this prolapse, you know, which could have caused the problem. So it was… I really think doctors need to do the blood test first and foremost to rule it out instantly.
Sheila never thought that she would die when she was diagnosed with breast cancer but she was very worried.
Sheila never thought that she would die when she was diagnosed with breast cancer but she was very worried.
But I think that actually in the back of my mind though, I wasn’t that sure if I was going to be alright, but I did at that stage, I mean I was studying part time, I was only working part time, I had to be terribly careful about money, and I bought a present for a little girl, here who had hurt her finger, I mean, I seemed to spend quite a lot of money, and I think I must have thought, well you know, if I’m not going to be around what difference does it make sort of thing. You know what I mean. So on one level I was absolutely positive, but on another level I actually probably was, was, was quite, quite worried. But I never thought that, I don’t think I ever thought that, you know, I, I might not be here in six months or a year’s time.
Being diagnosed with BRCA susceptibility genes
Ashkenazi Jewish women have a higher prevalence for carrying a mutation on the BRCA1 and BRCA2 genes, which means they have a higher risk of developing breast or ovarian cancer.
Caroline initially wasn’t too bothered when she discovered she had the mutation because it was ‘just some numbers and letters’, but she felt scared later when she read more about it.
When she found out that she had an increased risk of developing breast and ovarian cancer, Hayley said, ‘They give the statistics and that’s what really rocked me’.
Michelle described how ‘horrendous’ it was to find out that she was a carrier of the BRCA2 mutation because she was unaware of any family history of cancer.
After the initial shock, most women were grateful that they were now aware of the greater risk to themselves and to their children and that they had the opportunity to do something preventative.
Finding out she carried the BRCA gene enabled Karin to be proactive and she had a double mastectomy and her ovaries removed.
Finding out she carried the BRCA gene enabled Karin to be proactive and she had a double mastectomy and her ovaries removed.
Several women were concerned about whether the gene had been passed to their children and when to talk to them about being screened (see also 'Genetics and Inheritance: BRCA mutations' and 'BRCA mutations and preventive surgery').
Crohn’s disease
Sylvia, who was diagnosed with Crohn’s disease*1 over 30 years previously was given little information at the time, so she said she 'just got on with it' and treated it with a low fibre diet.
Sometimes it can take a while for Crohn’s disease to be diagnosed and when this was the case, people felt relieved to finally know what was causing their symptoms.
Hinda was relieved to finally find out that the stomach pains she had experienced for two years were caused by Crohn's disease.
Hinda was relieved to finally find out that the stomach pains she had experienced for two years were caused by Crohn's disease.
Well at least, I knew, well at least then there was something, I knew there was something wrong; that I wasn’t going mad. I mean I actually thought when the doctor said to me to see a psychiatrist, I thought, I knew I wasn’t mad, but I mean, I thought maybe, I knew there was something wrong. Yes, I was delighted, not delighted, but I mean I was happy that I knew there was something. That I wasn’t just imagining things because you do, I mean after two, over two years, of saying you’d got pains in your stomach and cramps in your stomach, and nobody believes you. I mean, my son at the time was only what 15? 14? 15, and he had just had his bar mitzvah and I thought, oh that’s what brought it on; the stress of that. Because I’m in the catering business I did the whole weekend. I mean I had hundreds of people for dinners and God knows what, a whole family thing, Friday night, Saturday night, Sunday night, Monday night. The whole weekend. I got this about a year, year and a half later, and I thought it was just the stress of all that. But I don’t know. Maybe it wasn’t, maybe it wasn’t. Who knows?
Some people were diagnosed with Crohn’s disease when they were teenagers or young adults.
Riva felt that having Crohn’s as a teenager affected her education and future plans.
Marcel found it helpful at the time to speak to a psychiatrist who was attached to the hospital.
Linda said she hadn’t really understood the implications of Crohn’s disease and that her parents were more traumatised than she was about her diagnosis.
Sara was devastated when her 12-year-old son was diagnosed, and she found it difficult to cope.
Gaucher disease, Torsion dystonia and Factor X1 deficiency
Type 1 Gaucher disease*2 is a genetic disease that is more prevalent among people of Ashkenazi Jewish ancestry than the general population (Jnetics, 2025). The symptoms of the disease vary widely.
Gary was diagnosed with Gaucher disease 18 years before when little was known about it. He was shocked when he was told he only had between 5 and 7 years to live.
Torsion dystonia*3 is a movement disorder involving uncontrollable and sustained muscle contractions resulting in repetitive movements and distortions of the body.
Aged 39, M was diagnosed with Torsion dystonia when he was 16 years old. He was told it would get progressively worse and there was no cure. Since then, he had deep brain stimulation, which helped his symptoms enormously (see the section on Treatment).
Factor X1*4 is a protein produced by the liver that is part of a chain of clotting factors responsible for stopping bleeding by forming a clot after an injury or surgery.
Although he had always bled and bruised easily from an early age, it was only when Helen’s husband Ivor had a hernia operation at the age of 70 that he discovered he had Factor X1 deficiency.
Tay-Sachs and Cystic Fibrosis
Miriam discovered she was a Tay-Sachs*5 carrier when she was 16 years old. Both parents have to carry the gene for there to be a possibility of their child having it. The condition is degenerative, and children often only live for 5-8 years.
At the time, Miriam wasn’t too concerned and felt that as long as she didn’t marry a carrier there wouldn’t be a problem with her having children in the future.
Katy was pregnant when she discovered she was a Tay-Sachs carrier. She was initially very concerned to find out if her husband was also a carrier, but she no longer worried about it when he was found not to be.
Miriam wasn't worried when she discovered she was a Tay Sachs carrier because she knew it wouldn't affect her ability to have children as long as her husband wasn't also a carrier.
Miriam wasn't worried when she discovered she was a Tay Sachs carrier because she knew it wouldn't affect her ability to have children as long as her husband wasn't also a carrier.
No, I didn’t really think about. Once I discovered I was a carrier, it was still very theoretical and I was just very... and in fact it’s never... as I say it didn’t turn out to be a problem, because within, the people I met in England, there wasn’t a problem with me saying you know, “I’d like you to be tested, because I’m a carrier.” And people, I suppose the people I was meeting, mostly people who are educated enough to know what it meant to be a carrier, that to marry a carrier if you weren’t a carrier was not something of great import... and therefore people didn’t say, “I don’t want to meet you again if you’re a carrier.” I didn’t find that at all. So I found people were willing to be tested.
Discovering that they were both carriers for the cystic fibrosis (CF)*6 gene was very confusing and 'pretty horrific' for Aaron and Rebecca. They were worried about what would happen after their child was born. However, the professional help they received in the first few weeks after their daughter was born was 'incredibly helpful'.
See also 'Getting a diagnosis'.
*1. Crohn’s disease is a chronic inflammatory bowel disease (IBD) that causes inflammation of the tissues in the digestive tract.
2. Gaucher disease is a lysosomal storage disorder characterised by the deficiency of a particular enzyme that leads to the body being unable to break down fatty substances in cells, causing organs and tissues in the body to swell or enlarge.
3. Torsion Dystonia is a neurological movement disorder that causes sustained painful muscle contractions that lead to twisting and distortion of the affected body part.
4. Factor X1 Deficiency (Haemophilia C), a recessive bleeding disorder that leads to uncontrolled bleeding caused by the blood not clotting as it should.
5. Tay-Sachs is a fatal lysosomal storage disorder that results in an accumulation of cells that causes damage to the nervous system leading to developmental delay and neurodegeneration (damage to or breakdown of the nervous system).
6. Cystic fibrosis is a condition in which the cells that make bodily fluids (secretions) have a mutation that causes secretions to become sticky and thick and plug up pathways, usually in the lungs and pancreas.
Last reviewed: August 2025.
Last updated: August 2025.
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