Hypohh.net

Issue 4 - Summer / Autumn 1999
May I first of all offer
Another milestone In HYPOHH's five year It's here. my apologies for the
HYPOHH.net Has Arrived ! history has been reached - the long-awaited
late arrival of this issue. I can explain.
launch of the official HYPOHH web site (www.hypohh.net). Launched at our third annual Open A few weeks ago, my beloved Day held at the Birmingham Children's Hospital on July 17th (see page 2), this extensive site computer decided to ruin my week by has already attracted more than 1,200 different visitors (an average of 11 new visits a day) crashing and wiping my hard disk clean.
from over 30 countries in all six continents.
At the time, the latest issue of info was So what is so special about HYPOHH.net ? Well, let us suppose you have just been about to be sent to the printers but as diagnosed with Kallmann's syndrome and you want to find out more about the condition, but everything I had done had been everything you have been able to find on the lnternet so far has been written with the doctor permanently lost, I had to write the in mind rather than being aimed at you, the patient. HYPOHH.net has been designed entire newsletter again from scratch. The specifically to make access to information on Kallmann's syndrome and other forms of moral of this cheerful little story is make hypogonadotrophic hypogonadism that much easier - for doctors and patients alike. For many regular backups of everything you do on a new visitors to the site, logging on to HYPOHH.net is their first ever encounter with fellow computer, because if you don't you risk sufferers. I can remember how excited I was the first time I met somebody else with losing the lot if your hardware fails.
Kallmann's syndrome - it was an emotional moment, for both of us. The beauty of the lntemet Our web site HYPOHH.net was is that it doesn't matter where you live in the world, you can find information on virtually officially launched in July with the aim of anything you can think of, quickly and cheaply - for little more than the price of a local phone making HYPOHH more accessible to our existing and potential members from both HYPOHH.net has seven main sections which all visitors to the site can explore and one the UK and overseas. Anybody, no matter additional section open to HYPOHH members only. You can read all about how and why where they live in the world, is now able HYPOHH was set up; apply online for HYPOHH membership; find answers to many frequently to learn all about Kallmann's syndrome asked questions about Kallmann's syndrome; leave messages on our ‘noticeboard' for other and other forms of hypogonadotrophic visitors to read and also read the online versions of our quarterly newsletter. If you are already hypogonadism from a patient's point of a member, you can read other members' personal stories and contact them if you wish. If you view. You can read all about HYPOHH.net have a professional or medical interest in Kallmann's syndrome or a similar condition, you may here on page 1 of this issue of info.
wish to invite visitors to the site to participate in a research project you are overseeing. In We also take a look at the events of short, HYPOHH.net aims to encourage cooperation between patients and the medical July's Open Day, our third such annual profession because, after all, we must all work together in order to achieve the ultimate aim event. A number of medical experts - to promote an earlier diagnosis and treatment. I am pleased to say that the medical volunteered to give up their Saturday to profession have been incredibly supportive of HYPOHH these past few years and with the speak on subjects which may directly arrival on the scene of HYPOHH.net, doctors from all around the world will hopefully take an affect us as sufferers at some point in our active interest in our work. Our international members are already benefiting from the amount lives, including hypogonadism in children of useful information they can find on HYPOHH.net.
and treatments for osteoporosis. Brief So what are you waiting for ? Get surfing on www.hypohh.net ! summaries of both of these talks are on Mark Saunders pages 2 and 3.
We dabble in the world of gourmet cuisine (well, maybe that's a slightexaggeration) by giving readers twocooking recipes for delicious meals with ahigh calcium content - calcium isessential for bone strength and thereforea key component of osteoporosis therapy.
The first ever HYPOHH Annual General Meeting was held on the same day as theOpen Day and elections to the Committeewere duly held, among them positions forsix regional coordinators.
Finally, we have a status report. It has HYPOHH.net Home Page
Info - the online newsletter
been a busy year so far and thanks to allyour support, HYPOHH's financial futurelooks much more secure than it did only12 months ago. We have ambitious plansfor next year, like staging our first everOpen Day in the USA some time in August2000 for the benefit of our many NorthAmerican members. Members this side ofthe Atlantic, rest assured - there will stillbe a July Open Day in the UK.
Mark Saunders One of 19 interactive animations
Our new contact details - e-mail: [email protected]
tel: +44 (0)208 892 0547 fax: +44 (0)208 891 2916

3rd HYPOHH Open Day
For the third year running, you have been unable to attend our three the HYPOHH Open Day on Open Days. Don't worry - we have not Information Booklet you got
July 17th was a well-attended event with more forgotten you. In fact, it is our hope to hold a a copy of our illustrated information booklet than 30 people and a handful of medical similar event in the US next year, our first ‘Understanding Kallmann's Syndrome - Your experts turning up. One of our members even outside the UK. We haven't yet decided on a Questions Answered' yet ? If not, please came all the way from ‘across the pond' venue, but Boston or Baltimore are possible contact HYPOHH for your free copy.
especially to be there. There were many candidates. It will probably be some time in ‘veterans' there, but also quite a few new August 2000, but that depends on the level of faces. To all those who came along to interest from doctors and patients alike. If you Birmingham, may I, on behalf of all on the are not yet a member and would like to be Committee, extend a personal ‘thank you' and kept informed, please contact me either by I hope you found the day's events worthwhile.
snail-mail or e-mail. Perhaps you are a doctor I would also like to thank Dr. Jeremy Kirk, his and would be keen to help or give a talk - in personal assistant Valerie Moore and Dr. Roger any case please do get in touch.
Francis for their help and for volunteeringtheir time and making the day such a success.
4th HYPOHH Open Day
There will be another Open Day (our fourth) in the UK in July next year - as alwayslet me know if there is anything you wish tosee covered on the day. My contact details areat the back of this newsletter.
Mark Saunders Dr. Jeremy Kirk, Consultant Paediatric Hypogonadism in Children Endocrinologist at the Birmingham
Children's Hospital gave a very interesting talk on establishing a diagnosis of hypogonadism in
young children and how it can be treated.
Although the full effects of hypogonadism may not become apparent until adolescence when the body fails to go through puberty, it is often possible to diagnose hypogonadism (or The Birmingham Children's Hospital is the abnormally low function of the gonads - testes in boys, ovaries in girls) before the age of housed in an impressive and recently puberty. Two key indicators that hypogonadism could be a possible diagnosis are renovated group of Victorian buildings.
cryptorchidism and a microphallus. Cryptorchidism is also known as ‘undescended' testes and Birmingham is England's second largest city the term microphallus describes small genitalia. Before boys are born, their testes normally with excellent transportation links to all parts migrate from their abdominal area to the scrotum. What happens with cyptorchid boys is that of the country and the rest of Europe. The their testes fail to migrate before birth and therefore remain in the abdominal cavity.
hospital is a renowned centre of excellence for Cryptorchidism is relatively common: it is estimated that about 5% of all boys exhibit some paediatric endocrinology. It was therefore the form of cryptorchidism, 25% if born premature. One medical definition of a micropenis is that ideal venue to hold the key event in the the penis, although normally formed, is less than 2cm Iong at birth. A girl can have the HYPOHH calendar.
equivalent of a microphallus with small labia and clitoris, although it is much rarer.
The Open Day started with the first ever When either cryptorchidism or a microphallus (or both) is observed, the next step is to HYPOHH Annual General Meeting which saw identify the cause so that a proper diagnosis can be made and treatment promptly initiated.
the existing Committee members re-elected Among possible causes are major chromosomal abnormalities, gonadal defects and a and five new ones elected (more of this on dysfunction of the hypothalamus or pituitary gland or both. Tests may then be carried out page 4). There followed a short demonstration which could include one or more of the following: genetic studies to see if the problem could of the HYPOHH web site (www.hypohh.net) be due to inheriting a defective gene from one of the parents; hormone studies to test the showing off the key features and amount of function of the hypothalamus and pituitary gland; an MRI or CT scan to investigate the information available (page 1). A short possibility that a tumour in the brain could be the cause and in drastic cases, surgery.
presentation on the state of HYPOHH's Cryptorchidism can be treated in a number of ways: one common treatment is the finances concluded the proceedings of the orchidopexy, a surgical procedure which aims to bring the testes down from the abdominal AGM. Minutes of the AGM will soon be posted cavity to the scrotum. Another option is hCG therapy; hCG is a hormone which is sometimes on HYPOHH.net inside the ‘Members Only' used in conjunction with a second hormone (hMG) to treat infertility. However, hCG can also section for those who are interested.
be used to treat cryptorchism but results are most encouraging after 4 years of age, success As on the two previous Open Days, rates varying between 33% and 99%. A third solution is the prosthesis (an artificial substitute HYPOHH invited guest speakers to give talks on - normally silicon - the size of a normal testis) inserted into the scrotum, although this may be different topics of interest. We heard that regarded by some as being a cosmetic rather than a medical option.
hypogonadism can often be diagnosed in young A microphallus can be the source of much embarrassment for those unfortunate enough to children and treatment begun before the have one and the psychological effects of this can be wide-reaching. It is therefore important normal age of puberty (page 2). Dr. Richard to start treatment sooner rather than later, although there is a huge debate as to when to treat Quinton talked about new theories on the - there is some suggestion from animal studies that giving large doses of testosterone soon genetic origins of Kallmann's syndrome (to be after birth may reduce penile growth in puberty, although this has not been confirmed in covered in a future issue of info) and Dr. Roger Francis, one of the UK's leading authorities on Baby boys experience a big surge of testosterone in the first 60 days of life after which osteoporosis and who sits on the National this drops to a much lower level. This post-natal surge is not found in boys with Kallmann's Osteoporosis Society (NOS) Council of syndrome. The amount of sex hormone produced in all young children is very low and remains Management, finished the afternoon by low until the normal age of puberty when the body begins to produce sex hormones. Teenagers concentrating on the determinants and causes with hypogonadism are unable to produce their own supply of sex hormone and therefore rely of bone loss, including hypogonadism (page 3).
on testosterone injections, creams, testosterone patches (or oestrogen patches for girls),hormone implants among other treatments to go through puberty.
1st HYPOHH (USA) Open Day
The key message is this: if your doctor notices a combination of undescended testes and Many of you live in Canada and the USA but micropenis, he or she should consider investigating for Kallmann's syndrome or another form because of the thousands of miles of Atlantic of hypogonadism.
Ocean separating the UK from North America, Mark Saunders 3rd HYPOHH Open Day
and strongly advisable to treat people What Causes Osteoporosis & How Can It Be Treated ?
diagnosed with osteoporosis after the HYPOHH invited Dr. Roger Francis vegetables and dairy products) and the normal age of puberty, although bone (Honorary Consultant Physician at the sex hormones testosterone and oestrogen.
densities will tend not to reach the Freeman Hospital, Newcastle upon Tyne If there is a deficiency of either calcium ‘safer' levels possible with treatment and a leading expert on the causes, or sex hormone, osteoporosis could initiated earlier in life.
diagnosis and treatment of osteoporosis) eventually become a problem.
A bone scan (similar to an X-ray, but to give a talk on the subject.
During normal puberty, the bones less harmful) will reveal the extent of any Put in simple terms, osteoporosis is a become stronger as a result of a calcium osteoporosis. Once diagnosed, condition describing the loss of bone rich diet and sex hormones circulating osteoporosis can be treated using structure, ultimately resulting in fragile around the body. Interestingly, contrary to specialist drugs such as Didronel PM0 or or ‘brittle' bones. One common what one might expect in men, it is not Fosamax, but Vitamin D (obtainable from stereotype of someone affected by only testosterone which works with sunlight and cod liver oil) and a calcium- osteoporosis is a little old lady with a calcium to increase bone strength. Small rich diet are also important. Weight- crooked back stooped over a walking amounts of testosterone are actually bearing exercise like brisk walking, stick, but the reality can be very converted naturally by the body to jogging and tennis is not only good for different. Men and women of all ages may oestrogen, the female sex hormone which losing those few extra pounds, but it also develop the condition.
also contributes to bone strength.
helps to build muscle around bone, There are several determinants of In hypogonadism however, no or very offering some additional protection peak bone mass at maturity, including small amounts of sex hormone are against painful fractures. race, sex, heredity, hormones, exercise produced naturally during this crucial is now a well-established link between and dietary calcium. Apart from the time and the bones are unable to calcify hypogonadism and osteoporosis if neither menopause, bone loss may be caused by a (i.e. strengthen) sufficiently. However, is tackled early on. Sadly, many low body weight, excessive smoking or the bones keep on growing (thanks to hypogonadism sufferers and their doctors alcohol, either too little or too much growth hormone which is not usually remain unware of the risks and sometimes exercise, insufficient absorption of absent) until a point is reached when the osteoporosis is not detected unti it is too calcium as well as by some forms of ends of the bone known as the epiphyses late to encourage any significant hypogonadism, such as Kallmann's ‘fuse' or harden and further growth is improvement in bone density. If you are syndrome. Around 16% of of male cases of concerned, pleased ask your doctor to osteoporosis are caused by hypogonadism.
It is therefore very important that in send you for a bone scan - if there is The two key ingredients for a healthy order to improve chances of increasing nothing wrong with your bones, you will bone density and therefore a low risk of bone density, hypogonadal osteoporosis is have nothing to worry about. If however developing osteoporosis later in life are diagnosed and treated before the osteoporosis is diagnosed, you are in a dietary calcium (a mineral found in many epiphyses have fused. It is still possible much better position than you would haveotherwise been had you not sought necessary. Serve with boiled basmati rice medical advice when you did and prompt Two Calcium-Rich Meals
and poppadums. A selection of chutneys treatment will help to reverse at least Spiced Chicken with Spinach (240 kcal)
and pickles also make a good some of the bone loss.
accompaniment to this dish.
If your doctor is reluctant to send you This recipe contains spinach and plain for a bone scan because of the cost or yoghurt, both foods rich in calcium. One Vegetable & Cashew Stirfry (350 kcal)
because he or she does not believe you portion served with rice contains 210 mg are sufficiently at risk, it is in your of calcium, one fifth of the recommended Yogurt, broccoli and cashew nuts are interest to persuade him or her that you daily intake (serves 4).
all rich in calcium - one portion provides believe a bone scan to be necessary. After a third of the daily intake (serves 2).
all, as the old motto goes ‘prevention is 450 g (1 lb) spinach
better than the cure'. There is evidence 25 g (1 oz) plain flour
15 ml (1 tsp) oil
to suggest that the long-term cost to the 30 ml (2 tbsp) vegetable oil
1 bunch spring onions (scallions), chopped
National Health Service (or indeed to your 1 large onion (sliced)
1 clove garlic, crushed
private health insurance company) of an 2 cloves garlic, crushed
2 courgettes (zucchinis), cut in strips
early diagnosis of osteoporosis as opposed 2 green chillies, sliced
100 g (4 oz) mangetout peas
15 ml (1 tbsp) ground coriander
to a late diagnosis and the treatment of 100 g (4 oz) broccoli florets
10 ml (2 tsp) ground cumin
1 red pepper, sliced
frequent or painful fractures is lower. If 5 ml (1 tsp) ground turmeric
75g (3 oz) unsalted cashew nuts
this argument does not work, ask for a 225 g (8 oz) fresh spinach
Grated rind of 1 lemon
second opinion from a different doctor, 300 ml (10 fl oz) plain yoghurt
10 ml (2 tsp) cornflour
even if it is for your own peace of mind. 15 ml (1 tbsp) milk
Mark Saunders 150 ml (5 fl oz) plain yoghurt
Cube the chicken and coat with the If you would like to know more about Heat the oil in a wok or large frying the work of the NOS, please write to: Heat the oil in a large heavy-based pan. Add the spring onions and garlic and saucepan and brown the chicken. Add fry, stirring continuously for 1 minute.
The National Osteoporosis Society sliced onion and cook until softened. Stir Stir in the remaining vegetables and the in the garlic, chillies and spices.
cashew nuts, stirfry for 5 minutes. Add Was the spinach and remove the tough the lemon rind. Blend the cornflour with stalks. Add the spinach to the chicken the milk and stir in the yoghurt.
mixture. Cover and cook for 5 minutes Stir the yoghurt into the vegetable until the spinach wilts. Add half the mixture and heat through gently, without or visit their web site: www.nos.org.uk yoghurt, cover and simmer for 30-35 When the chicken is cooked, remove Reproduced with the kind permission the pan from the heat and stir in the of National Osteoporosis Society; recipes remaining yoghurt. Season with salt if from NOS booklet ‘ Diet & Bone Health'. 3rd HYPOHH Open Day
and I shall do my best to help.
Committee Elections Annual
Below are the names and contact General Meeting held on July 17th, details of the six newly-elected HYPOHH elections were held for the committee.
regional coordinators: You can contact us in one of four ways: The existing committee members (Chairman Dr. Pierre Bouloux, Secretary
Ann Ewart (South & East Yorkshire)
Pen & Paper: Mark Saunders and Treasurer Lorna
Tel: (01964) 543 885 Saunders) were unanimously re-elected.
Six regional coordinators were also Andrew Gibson (North & West Yorkshire)
19 Beresford Court elected to the committee. With the Open Tel: (01977) 642 501 Day being the one and only major event of the year, it was felt that many of our members all over the UK would welcome Judy Studd (Midlands & Female Sufferers)
the opportunity to attend another one or Tel: (01908) 560 379 two regional meetings a year. Regionalcoordinators would also be responsible for Lynne Kay (Hampshire & West Country)
liasing with endocrinology, gynaecology, Tel: (01705) 653 109 paediatric and urology departments atlocal hospitals to help promote awareness Kevin Dietz (USA Coordinator)
of Kallmann's syndrome and other forms Tel: (719) 260 9189 of hypogonadotrophic hypogonadism.
duly held. Please feel free to get in touch with your regional coordinator for more Mark Saunders (London & Southeast)
information or if your region is not Tel: (0208) 892 0547 covered, just contact me (Mark Saunders) E-mail: [email protected] HYPOHH is a patient support group run
by volunteers. We rely considerably on the
As of the date of publication of this newsletter generosity of individual donations and
HYPOHH Status Report (October 1999) HYPOHH had over 60 members
would like to thank those who have sent us
worldwide. After last year's financial acrobatics and the reluctant introduction of membership fees to cover the basic administration costs of running HYPOHH, this year our future looks much If you wish to make a donation, please
brighter although we are not talking about a vast fortune here, just a couple of thousand pounds.
send a personal cheque made payable to
Some of you have made very generous donations - a special thanks to you (you know who you ‘HYPOHH', not ‘Mark Saunders'.
are), but every donation counts, no matter how small the amount. We should be able to make itcomfortably through next year and possibly the year after, but that is assuming that most of you For more information on pituitary gland will renew your memberships in 2000/2001. We cannot afford to become complacent though - or hypothalamic disorders other than HYPOHH still needs your support, both moral and financial, to continue our work.
Kallmann's syndrome and other forms of Most of our members are either patients, members of their families or doctors with a hypogonadotrophic hypogonadism, please professional interest in hypogonadotrophic hypogonadism. We also have one or two members working in the pharmaceutical industry and their support is greatly appreciated. HYPOHH alsoneeds corporate sponsorship to help support our larger projects, because it is inevitable that Pen & Paper: these will cost the most money. For example, the booklet ‘Understanding Kallmann's Syndrome The Pituitary Foundation - Your Questions Answered' is now over three years old and we would like to update it some time before the end of next year. We need money from the pharmaceutical industry to pay for the Patient Support Administrator cost of publishing the second edition of the booklet and this could run into several thousands of Other possible future projects are to publish posters or flyers on HYPOHH and distributing these to hospitals, such as endocrinology, urology or paediatric departments. Hospitals are theprobably the best place to inform recently-diagnosed patients about HYPOHH and how it can help Telephone / Fax : them come to terms with their condition. If you have any money-raising or, as the case may be, money-spending ideas, please share these with me. Anything goes, as long as it's legal and itdoesn't hurt.
Mark Saunders Some copies of all three previous issues of info are still A very special thanks to:
Back Issues of info available to HYPOHH members on request.
Dr. Jeremy Kirk, BirminghamValerie Moore, BirminghamDr. Roger Francis, NewcastleNational Osteoporosis SocietyManagement Graphics, London

Source: http://www.hypohh.net/pdffiles/info4pro.pdf