Our family has held membership with the Foundation for over 25 years.
Allison was born with Turner's syndrome, but was not diagnosed (by an astute school doctor) until she was six, despite frequent consultations with various members of the medical profession; despite ear and digestion problems; despite sleep disorder; and despite the typical fall-off of growth. By some stroke of good fortune, via a TV programme, we discovered the CGF, and finally received the support and information we so desperately needed.
For some years we were active members, running a support group, and attending annual conferences. During her early adolescence, Allison received growth hormone but to no avail. Her adult height reached completion at 4' 4 ½”, no need for me to tell you just how important that ½” is!
We know how parents of newly diagnosed children feel about the future, and we do know how you try to imagine what their future may hold. Allison does not consider that she has any significant problems, and because of this has declined to attend any meetings, or take part in any research. She is not in denial; she simply considers the label she bears to be of no importance. She came to terms with childlessness from the very beginning. We ensured that neither of our children (we have an older son) fell into the trap of assuming that everyone is able to have children, and from the age of diagnosis we openly discussed alternatives with them both. Her condition does manifest itself occasionally with the misinterpretation of facial expressions, and very occasionally `out of sinc' comments during conversations. Other than that, we rarely remember that she has Turner's.
She is fortunate to have a lovely face and figure, and a practical personality. She is always the leader within her peer groups, and we can honestly say that no one takes Turner's into consideration. She does turn heads when she is in a new situation, but we think that is because she is such a stunner!
Sadly, at the age of 14, Allison developed Chronic Fatigue Syndrome (M.E.), and from that day has only ever been able to undertake her education on a part time basis.This condition has affected every aspect of her life, and our entire family. If only it were as easy to deal with as Turner's!
Despite this double whammy, it will interest you to know that last year Allison gained a 2:1 in her Archaeology BA degree, and is now mid way through her MSc in Paleopathology. She has accomplished all of this on a part time basis, still living at home with practical support from us. Although she receives a disability allowance, this is entirely due to her secondary condition, and not Turner's.
Allison is a source of joy to all who know her, and we hope this brief summary of her life, so far, will be a comfort to you, and maybe an inspiration.
Last year I was diagnosed with Coeliac disease, which seems to be more common in Turners women, although certainly not confined to them; apparently it affects about one per-cent of the population, many of whom are undiagnosed. I received the diagnosis last summer after a routine blood test carried out by the Middlesex Turners clinic. This explained the anaemia I had suffered from and my reactions to certain foods. For some time I had wondered if something was wrong with my stomach but I had concluded that I was being a hypochondriac; perhaps I should have trusted my instincts. It was a blow finding out that I had yet another problem other than Turners but then there are many worse problems I could have to face, diabetes for example.
Coeliac disease is an auto-immune disease, which means that the body attacks it’s own tissues. The gut reacts to the gluten found in wheat and this means that food cannot be digested properly. Symptoms include bloating, diarrhoea, nausea, wind, tiredness, constipation, anaemia, mouth ulcers, headaches, weight loss, hair loss, skin problems, short stature (particular significant for Turners girls who need all the height that they can get), osteoporosis, depression, infertility, recurrent miscarriages and joint/bone pain. The blood test gave me the first indication that I had Coeliac disease but last July I also had an endoscopy or biopsy of the gut to confirm the diagnosis. This is a rather unpleasant experience involving having a tube down your throat under local anaesthetic and a bit of the gut being scraped away for analysis. However it does not last very long.
Once I was diagnosed, the treatment involved a special diet cutting out gluten. This means I must have a special bread (which is not very pleasant, although many people find making their own bread helps) and pasta (which is fine). These may be obtained on subscription. A lot of things that you do not expect contain wheat and you have to be careful. Although it is very frustrating having to be aware of everything that you eat, particularly when friends invite you for a meal or you are eating out, things are much better than they once were with a much wider variety of special foods available and a greater awareness. It is relatively easy to find gluten free food (very much easier than it once was; many people now are reducing their wheat consumption) and my friends and family have been very supportive. The excellent Coeliac Society produces a book setting out foods that may be eaten. There are also many foods that may be eaten without a problem; meat, fish, vegetable, fruit and dairy. Although it is annoying, Coeliacs disease does not stop you having a varied and delicious diet. If you feel that you may have the disease (and as a Turners woman there is a greater than normal chance) it is important to see your doctor to investigate and (if necessary) diagnose, as leaving it undiagnosed could have long term health implications.
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Russell Silver Syndrome (RSS) | Premature Sexual Maturity (PSM) | Sotos Syndrome | Turner Syndrome | Intrauterine Growth Retardation (IUGR) Multiple Pituitary Hormone Deficiency (MPHD) | Bone Dysplasia | Growth Hormone Deficiency (GHD) | Small for Gestational Age (SGA)