Francis Menassa, JAR Capital: DEBRA’s fundraising on a roll, but fight against EB continues

DEBRA, the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB), has stepped up its fundraising drive to fight the rare but excruciatingly painful skin disease.

EB is a group of genetic skin conditions which cause the skin to blister and tear at the slightest touch. The skin is so fragile that painful open wounds and sores form where the skin is damaged – in some cases, internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are factors that people living with EB often have to face.

In November 2018 DEBRA celebrated its 40th anniversary with a dinner at Buckingham Palace for major supporters hosted by its Royal Patron, HRH The Countess of Wessex. This dinner helped support a successful #Fight EB campaign, which raised over £300,000 on top of DEBRA’s usual fundraising activities. Included in this was the phenomenal support of Spiderman actor Tom Holland and his family charity, the Brothers Trust. Through one online raffle, they raised £44,000 for a photo of Tom Holland, which had been taken by James Dunn, an EB sufferer, who sadly passed away at the end of the campaign.

Working to a tight budget

When it comes to the numbers, DEBRA may be small, but in terms of research and quality of care, it certainly punches above its weight. The charity currently receives most of its income from an extensive network of shops – there are 130 shops located throughout the UK. In fact, amongst the charities that have shops, it is in the top 12 in terms of income, making over £2 million a year. Of that, £500,000 comes from gift aid alone. The rest is mainly made up of fundraising from individuals.

Nevertheless, the charity has to work to a tight budget. At present, the annual charitable spend is around £3 million, most of which is used for research. There are now 24 researchers funded by DEBRA. They are dedicated to improving understanding of the biology and genetics of the disease such as the nature of wound healing and the development of skin cancer, finding better treatments and prevention strategies, ultimately trying to find cures through gene, cell, drug or protein therapies.

Alongside this, DEBRA provides healthcare as well as practical support. Sufferers are generally covered in blisters which need lancing and treating daily. Many children have to take morphine and it can take up to four hours every morning and evening for parents to bandage them.  Not only that, the charity helps children cope with transitions in life, for example, when they go to school or university.

Fundraising, challenging but fun

I am fortunate in that I have healthy children, but there are those who are not so lucky; their life is blighted by EB. When, in 2011, I first heard some of their stories, this became a cause very close to my heart. I knew I wanted to become involved. Ever since, I have thrown myself into a number of fundraising activities, and in some cases, major challenges.

For instance, between 2012 and 2015 I took part in the annual HotChillee London to Paris cycle ride, a 500km trip over three days arriving in Paris for the final Stage of the Tour de France. It involved months of training and fundraising, but in every sense, it was worth it and great fun too.

Another regular fundraising activity is through the DEBRA Shooting Society. Originally set up in 2004 by Richard Purdey, the then Chairman of James Purdey & Sons and supported by Daryl Greatrex, the managing director of Holland & Holland, (two of the world’s best known gun maker brands) the Society organises charity clay pigeon shooting events around the country. I usually take several teams to these events; either friends or work colleagues. They are well-run events and the charity raises over £75,000 every year from these alone. However, there are certainly plenty of other charity events too – golf, gala events and even a butterfly walk.

Yes, the fundraising is gathering momentum and DEBRA has made great strides in research and the care and support that it offers. But these are difficult times for charities, and we must continue to fight for those suffering from the pain and devastation that EB causes. There is plenty of work yet to be done.

 

Common issues men in their 40s face when they travel

As people enter their 40s, they may still feel like a twenty-something on the inside, but their bodies begin to give some not-so-subtle reminders of reality.

Men in their big four O’s often have to adjust their lifestyles and habits to accommodate these changes. When it comes to travelling, however, maintaining your adopted lifestyle habits becomes a whole other ball game.

There are, however, a particular set of problems that older men usually face when they travel. If these can be addressed appropriately, then their travel experiences and their health can be significantly improved.

Here are some common issues men in their 40s face when they travel.

Lack of sleep

Travelling thoroughly messes up anyone’s sleep cycle, but younger people recover from this much quicker than men that have crossed the 40-year mark.

When one is younger, sleep comes easier and is deeper. Older people tend to have lighter sleep within shorter periods. Barely getting enough sleep as it is, when older men spend long hours travelling on aeroplanes or trains attempting to catch some shut-eye to no avail, they can end up tremendously sleep deprived during and after travel.

Sleep deprivation affects cognitive performance, memory, energy levels, reaction times, emotions and can leave one feeling quite under the weather.

Scheduling travel itineraries to allow for sufficient sleep and recovery can do wonders for allowing you to not only be active throughout your trip but also makes it an immensely enjoyable experience.

Chronic fatigue

This occurs both in conjunction with and as a consequence of the lack of sleep. People in their 40s may experience fatigue as a normal part of their lives.

Chronic fatigue, however, is defined as a condition of constant tiredness and lack of energy, not associated with any illness, occurring for longer than 6 months.

It is imperative to preempt this and get sufficient rest and sleep before chronic fatigue sets in. Once it sets in after you pass 40, it can get progressively difficult for your energy levels to recover and revert to what they were previously.

Hair loss

Hair loss is quite common for men in their forties, but what many people don’t know is that this issue gets aggravated due to changes in climate, environment, water and diet. And these are the very conditions that your hair is subjected to as a result of travelling.

To avoid seeing strands of your hair clog up your hotel shower the next time you travel, hair loss treatments are the perfect solution.

There are two approved drugs to treat male baldness.

Minoxidil (Rogaine) is available for topical application as a liquid or foam. This rub-in hair loss treatment works by increasing blood flow and stimulating hair regrowth. Not only does it help with regrowth, but it also helps to keep the strands that you already have.

Finasteride (Propecia) is a hair loss treatment widely available in pill form. The method of action of this drug involves lowering DHT (dihydrotestosterone), the hormone responsible for shrinking hair follicles. It can slow hair loss as well as help hair regrow.

If you feel like your recent travels may have triggered accelerated hair loss or would like to inquire about hair loss treatments before going on a long trip, book an online consultation with the health experts at Click Pharmacy. Along with professional medical advice and online prescriptions, you can conveniently purchase the prescribed medicines from this registered online pharmacy.

Sun damage

Travelling usually entails long hours in the sun.

Even if you are not going to a very sunny place, skin damage from being out in moderate sunlight is still a risk.

Typically, it takes around 30 years for sun damage to show, which means that most of the effects of sun damage that occurred in your teens begin to manifest after you reach the 40s. Since wrinkles and sun spots are already making an appearance, the skin of men over 40 is usually more susceptible to the damaging rays of the sun.

Older individuals with fairer skin tones are at most risk of developing skin cancers. Exposure to UV light and sunburns are some external contributors to malignant skin cancers.

There is also a high prevalence of cataracts among men above forty years of age. This is a condition that results in the clouding of the lens in the eye, leading to a decrease in vision. Ageing itself is a contributing factor to cataracts, but exposure to UV rays in sunlight can further increase the risk of cataracts and other eye conditions.

It is therefore imperative for those in the 40-plus age group to be stringent with the application of sunscreen with SPF of at least 30, as well as wearing sunglasses that filter out UV light whenever they are travelling.

Nutritional and dietary imbalances

Travel often disrupts the most carefully planned diets for people of all age groups.

For men in their 40s, specific dietary requirements and restrictions are essential for staying in optimal health.

After 40, your metabolism slows down considerably, making it extremely easy to pack on the pounds. Weight gain is a contributing factor to several age-related issues like diabetes, high cholesterol, high blood pressure and even heart disease.

Lowering fatty and high cholesterol foods, as well as maintaining sufficient intake of the required nutrients are a few dietary considerations that need to be applied once you cross forty. But even the best of habits can be unsettled by the drastic change in routine incurred by travel.

Keeping a well-stocked inventory of your daily supplements, and being strict with what you eat and what you avoid, can do wonders for preventing any medical issues and unwanted weight gain.

According to NHS, It is highly advisable for those aged between 40 and 75 to get an NHS Health Check every five years. These routine health checks serve to measure the risk of developing diseases like heart disease, kidney disease and dementia, identify early signs of these and also offer advice on preventive measures that can be taken.

Photo by Annie Spratt on Unsplash