What fundraising events do you have that I can get involved in? Expand Being the small charity we are, we do not have our own fundraising events for you to join. We rely on inspiring individuals to do their own thing to raise funds and awareness for Alopecia UK. If you are looking for inspiration, check out our Fundraising Ideas - A-Z. Or have a browse on our website to see what others have done to raise funds for Alopecia UK. We do not have the capacity to purchase large numbers of places in externally organised challenge events. Again, we rely on individuals securing their own places and using those to raise funds for Alopecia UK. There are lots of different events from a variety of event organisers across the UK.
Can we bring any of our own food and drink to the centre? Expand You are able to bring along some snacks if you would like; however, the kitchen will provide three meals per day and there will be fruit available throughout the day. There is also a tuck shop on site should you wish to bring along some money. No alcohol is allowed to be consumed on-site.
What’s included in the price of the ticket? Expand (Please note - Our activity schedule hasn’t been confirmed yet however here is a list of all the activities the centre provides) Included in the rest of your ticket are: Accommodation for both Friday and Saturday night. Dinner Friday night Breakfast, Lunch and Dinner Saturday Breakfast Sunday morning All activities
Common Treatments for Alopecia Areata Information about common treatments for Alopecia Areata Expand Topical corticosteroids Topical steroids are creams, ointment, lotions, or foams that are applied directly to the scalp or skin surface. The aim of topical steroids is to dampen down the inflammation within the skin. There are different strengths and formulations available. Usually a potent or very potent topical corticosteroid is needed to treat Alopecia Areata, as weaker products tend to be less effective. The formulation prescribed is important, as some preparations (e.g. ointments or creams) are often too greasy to be tolerated regularly on the scalp. Advantages Studies have demonstrated hair regrowth with the regular use of potent topical steroids. They are commonly used in children and adults, as they are easy and painless to apply. Disadvantages Their effectiveness is limited by their absorption through the scalp. If used excessively over a long period of time, there is the potential risk of skin thinning and enlarged blood vessels in the skin, causing it to look red. Intralesional corticosteroids These are steroids that are injected into the affected areas just underneath the skin using a fine needle. Examples of intralesional corticosteroids are hydrocortisone acetate and triamcinolone acetonide. Advantages Intralesional corticosteroids have shown to be more effective than topical corticosteroids for hair regrowth. When intralesional corticosteroids are effective, hair growth is usually seen at the site of injection within four to six weeks. Disadvantages There is a risk of skin thinning that can cause a temporary depression (or dint) at the site of injection. The needle prick can be uncomfortable and the whole area that can be treated in one go is quite small; therefore, it is usually only used for fairly localised patches and smaller areas of Alopecia Areata. Intralesional corticosteroids are not routinely offered to patients with Alopecia Totalis or Alopecia Universalis. Steroid injections can only be performed by medically qualified practitioners. Systemic corticosteroids These are steroids that are taken orally as a pill or injection in the muscle (intramuscularly). Examples are oral prednisolone or intramuscular triamcinolone acetonide (Kenalog). Systemic corticosteroids mimic the effects of hormones your body produces naturally. When systemic corticosteroids are given in doses that exceed your body's usual levels, they suppress the immune system, which can allow hair to re-grow. Systemic steroids are often used as a short-term measure to try to stop the hair from falling rapidly or “kick-start” the hair to regrow. Long-term systemic steroids are usually avoided as they can cause serious side effects when taken for too long. Advantages It is a tablet taken every day, therefore easy to take. This treatment can be used for patchy Alopecia Areata and more extensive hair loss (Alopecia Totalis or Universalis). Treatment with systemic corticosteroids will produce hair re-growth in some patients. Disadvantages Most young patients tolerate this well with no side-effects. Some side-effects include heartburn, increase risk of infection, weight gain and restlessness/mood disturbance. Long-term systemic corticosteroid use is associated with serious side effects including diabetes, high blood pressure and bone thinning. This treatment also has a high rate of hair loss recurring once the treatment is stopped. Contact Immunotherapy The aim of this form of treatment is to induce a local allergic skin reaction (contact dermatitis) that stimulates hair re-growth by distracting the immune system from attacking the hair follicles. In the UK Diphenylcyclopropenone (DPCP) is the most commonly used treatment. In contact immunotherapy, the treatment is initially applied at a higher concentration to a small area of the scalp or the arm, in a process called sensitisation – this makes the person allergic to the solution. Two weeks later a weaker concentration is then applied to the affected areas on the scalp. The solution usually remains on the skin for up to 24 hours and is then washed off. The aim of treatment is to cause a low-level reaction lasting 24-36 hours, with the scalp feeling a little itchy, red and flaky. The strength of the medication is gradually increased, depending on the level of the reaction. Advantages Current research shows that 50-60% of patients with Alopecia Areata achieve a worthwhile response, although those with more extensive hair loss (e.g. Alopecia Totalis and Alopecia Universalis) do less well. Treatment is usually continued weekly until the hair has re-grown, which may take up to 12 months to achieve. Disadvantages This treatment requires a significant time commitment as usually it is only available in hospital departments and requires repeated applications over a period of months; home treatment is not widely available in the UK at the moment. The side effects of contact immunotherapy include dryness/ redness of the skin (appears like Eczema), hives, small itchy blisters on the feet/ hands (called Pompholyx) and the loss of pigment in some areas leading to white patches (called Vitiligo). The lymph glands in the neck and armpits may become enlarged as a response to the treatment. It is important to avoid these medications touching other areas of the body; therefore, gloves and other PPE should be worn by the practitioner applying it. The team at Salford NHS Foundation Trust have very kindly put together these helpful videos on: DPC Sensitisation: https://youtu.be/ONONMpXRH_w DPC Treatment: https://youtu.be/8sw3-oRLGBs
Is everyone going to be showing their alopecia and removing wigs/hats to go on the rides? Expand It is about personal choice and whatever you feel comfortable doing. There will be lots of us around doing some awareness raising and taking wigs/hats off to go on the rides. We have found in previous years that lots of people actually want to remove their headwear and felt quite empowered doing so, particularly because it was amongst a large group of others with alopecia. Some people wear wigs and hats, others don't, and some just take it off in the queue for rides. The nice thing is that people feel free to choose. It can be quite a nerve-wracking thing to do if you don't normally show anyone your alopecia, if this is the case for you we would encourage you to join an Alopecia UK group just in case you do decide you want to remove headwear for going on rides. You certainly do not have to and you will be respected, as well as supported, in what you choose to wear or not wear. While many may have wigs/head coverings that stay on when going on rollercoasters, we want to create an environment where people feel comfortable to have the choice in what they do! (Weather permitting - it can be quite chilly in April!).
Do I have to buy a blue Alopecia UK t-shirt and/or jacket/hoodie? Expand It is not compulsory however we would recommend that you do as it will help you to feel included and a part of the event on the day. Everyone wearing the blue tops is what creates the supportive atmosphere in the park and everyone has fun spotting the blue tops as they make their way around the park (particularly the children so please do make the effort if you can!). If it is someone's first time and they feel a bit nervous about standing out as having alopecia, then it is perfectly understandable that they may not feel entirely comfortable wearing the blue tops. But trust us when we say they might feel differently on the day which is why we recommend getting a top just in case! It helps to have any accompanying friends and family in the blue Alopecia UK tops too. Power in numbers! You can read a bit more here under Useful Information.
Why a Theme Park? Expand Theme parks and rollercoasters can typically be an activity that people with alopecia either avoid or don’t enjoy as much as they should due to worrying over concerns about wearing wigs and hats on rollercoasters. Alopecia UK organised an Alton Towers day out for the first time in 2014. It was a fantastic day that was enjoyed by everyone, so much so that we decided to make it an annual event so that more people affected by alopecia can enjoy the experience.
What are Alopecia UK doing at Alton Towers? Expand Simply facilitating a large group of people to go and do an activity that is typically avoided by those with alopecia, i.e. going on rollercoasters. We find that having plenty of us there gives a confidence boost! You can find out more information about the day here.
Facebook Group Expand Over the past few years we have created a Facebook group ahead of the event to allow attendees to meet and get to know each other ahead of time. It’s nice for people to share their excitement/nerves ahead of the day and a great place to ask questions. We will send links to join closer to the time. Please note this is a different group to the general Alopecia UK Facebook group and you will not be able to find it through searching for it as it is also a secret group.
What sort of food will be available? Expand Please see here for an example food menu. All dietary requirements can be catered for. Please indicate any dietary requirements at the time of booking. These will then be passed to the Kingswood team to cater for.
Minoxidil and Bimatoprost for Alopecia Areata Information about Minoxidil and Bimatoprost for treatment of Alopecia Areata. Expand Topical Minoxidil Minoxidil is available off prescription, as a liquid or foam that is applied to the scalp. It is usually applied once or twice a day. Minoxidil is only licensed to treat male and female pattern hair loss (Androgenetic Alopecia); however, it is also used to treat Alopecia Areata, either alone or combined with corticosteroid treatment. Advantages It can be applied at home and has minor side effects only. If effective, hair re-growth can take four to six months to appear. Disadvantages It is less effective on its own for Alopecia Areata, and therefore is often only used as an additional treatment alongside some of the other treatments mentioned here. It can cause dryness, redness or irritation when regularly applied to the scalp and may stimulate facial hair growth in some women. Bimatoprost (eyelashes only) Bimatoprost 0.03% is a solution originally used as an eye drop to treat glaucoma. It was observed that in people using this treatment their eyelashes grew thicker and longer. Since then Bimatoprost (marketed under the name Latisse®) has been approved as a cosmetic product in the US to treat short and poorly growing eyelashes. When bimatoprost is used to treat eyelashes, it should only be applied to the upper eyelid margin at night time (with a small brush or cotton bud) but never put directly into the eyes. Advantages It can take up to four months for hair re-growth to be visible; however, people have reported a noticeable difference in as little as eight weeks. Disadvantages It can cause irritation in the skin, can cause a permanent changes in the colour of the eyes (to a dirty brown) if applied directly into the eye, and skin pigmentation may also be affected (turning the eyelid skin either lighter or darker).
Immunosuppressive Treatments for Alopecia Areata Information about immunosuppressive treatments used for Alopecia Areata. Expand Ciclosporin Ciclosporin is an oral treatment that suppresses the immune system. It is commonly used in several inflammatory skin conditions such as Psoriasis and Eczema. It comes in the form of capsules that are taken twice a day. Advantages It is a tablet form taken every day, therefore easy to take. There are a small number of trials that show evidence that Ciclosporin can stimulate hair regrowth in Alopecia Areata. Disadvantages It requires blood test monitoring because of the effect it can have on the kidneys, which also means regular clinic appointments. For this reason, the treatment course is usually limited to six months. Other side effects to be aware of include increased risk of infection, increased blood pressure, headaches and gum swelling. Methotrexate Like Ciclosporin, methotrexate is commonly used to treat a number of inflammatory skin conditions such as psoriasis and eczema. It also works by suppressing the immune system. Advantages It is a tablet taken once a week. It can be taken for longer periods of time than Ciclosporin. Larger groups of patients have been studied using this treatment for Alopecia Areata and hair regrowth has been observed, especially when combined with other treatments such as corticosteroids. Disadvantages It requires regular blood test monitoring because of the effect it can have on the liver and blood cells. Women of childbearing age, and men, are advised to use effective contraceptive precautions during treatment and for 6 months after stopping as it can have severe effect on the unborn baby. Common side effects include tiredness, nausea (vomiting) and headaches; serious side effects include increased risk of infections, bleeding problems and liver abnormalities. Azathioprine Azathioprine is a medication that works by suppressing the immune system. It is often used in inflammatory conditions, including severe Eczema. Advantages It is a tablet form taken every day, therefore easy to take. It can be taken for long periods of time such as months or years. Azathioprine has been shown to help hair regrowth in a small number of cases reported in the medical literature. Disadvantages It also requires regular blood test monitoring as it can affect the blood cells and liver. It can also increase the risk of infection and may cause diarrhoea, tiredness and increase the risk of skin cancer. Some studies suggest that Azathioprine can help hair regrowth and potentially work better than Methotrexate and Ciclosporin.
Future Treatments for Alopecia Areata? Some of the treatments that may be an option for Alopecia Areata treatment in the future. Expand Possible Future Treatments for Alopecia Areata: These treatments are currently not available on the NHS, but this may change in the future. Some of these treatments are still being reviewed to assess whether they are appropriate and useful for Alopecia Areata patients. Oral JAK inhibitors Oral JAK inhibitors to treat Alopecia Areata are still being studied. These are treatments that target different parts of the Janus Kinase enzyme family, which are important steps in causing inflammation, including the inflammatory pathways that occur in active Alopecia Areata. Therefore, when these are blocked, inflammation is reduced. There are currently six JAK inhibitors which have been reported to be successful in treating Alopecia Areata. These are: Tofacitinib, Ruxolitinib, Baricitinib, CTP-543, PF-06651600 and PF-06700841. These are tablet medications. Advantages Reports suggest they may be very effective in causing hair regrowth in some patients with very extensive hair loss or who have had Alopecia Areata that has been resistant to other treatments over the years. However, we are still awaiting clinical trial results to say for certain. These drugs are generally are well tolerated. Disadvantages These are novel treatments; therefore, we are still trying to understand how effective they are and their side effect profile in the long term. Side effects that have been noted already include nausea, headaches, increase risk of infection (including herpes (cold sore) virus reactivation), anaemia, high cholesterol and potentially increase risk of blood clots. There are reports of relapse following discontinuation of this treatment. Topical JAK inhibitors Topical JAK inhibitors to treat Alopecia Areata are still being studied. Current studies have shown that topical JAK inhibitors have not shown satisfactory results for scalp hair regrowth; however, have shown some improvement with eyebrow and eyelash regrowth. The two main topical JAK inhibitors that have been tested and have shown some success with eyelash and eyebrow regrowth are Tofacitinib 2% ointment and Ruxolitinib 0.6% cream. Advantages Studies have shown some success with re-growth of eyelash and eyebrow hair. These have been fairly well tolerated with no complications. The application on the skin reduces the risk of side effects compared with the oral form. Disadvantages Poor response on the scalp. Ustekinumab Ustekinumab reduces inflammation by blocking the activity of chemical signalling molecules (called cytokines), specifically interleukin 12 and 23, that trigger inflammation. It is commonly used in psoriasis and Crohn’s disease. It has been shown in a small case series that it can help hair regrowth in moderate to severe Alopecia Areata. It is injected under the skin of the stomach, thighs or upper outer arms. Advantages Initially patients have an injection on week 4 of treatment and after that every 12 weeks. Disadvantages It can increase the risk of serious infections. Patients can experience reactions at the injection site, fatigue, headaches and sinusitis. We do not have sufficient evidence with regards to the efficacy of this treatment for Alopecia Areata. There have also been case reports of patients developing Alopecia Areata during their Ustekinumab injections for other conditions. Ustekinumab is very expensive. Dupilumab Dupilumab is a biologic medication given through a subcutaneous injection (injection under the skin) that works by blocking chemical messengers (also known as cytokines) in the body called interleukin 4 (IL-4) and interleukin-13 (IL-13). It is currently being used to treat atopic eczema on the NHS. One study has shown a significant improvement in Alopecia Totalis following dupilumab treatment whereas another paper reported cases of Alopecia Areata developing shortly after starting dupilumab for their eczema. Therefore, further clinical trials are needed to assess the role of dupilumab in the treatment of Alopecia Areata. Advantages It is an injection every 2 weeks. It is shown to be very well-tolerated with minimal side effects. Disadvantages The main side effect reported is conjunctivitis (inflammation of the eyes) causing redness, itch and discharge. Other side effects reported are headaches, cold sores and eczema around the eyes. Further clinical trials are necessary before this treatment can become routinely available for Alopecia Areata. Dupilumab is classed as a high-cost drug, so very expensive. Apremilast Apremilast is an inhibitor of the phosphodiesterase 4 (PDE4), which reduces inflammation. PDE4 has been found to be expressed in patients suffering with Alopecia Areata. It comes in the form of a pill that is taken daily. It has been approved and used for the treatment psoriasis and Psoriatic Arthritis. A study of the safety and efficacy of Apremilast in patients with moderate to severe Alopecia Areata is currently in progress. There have been variable results reported in the literature up till now, including good hair regrowth and a study showing no treatment response at all. Advantages Good clinical response in some Alopecia Areata patients. Safe and well tolerated. Oral tablet. Disadvantages Further clinical trials are necessary before this treatment can become routinely available in the treatment of Alopecia Areata. The main side effects are diarrhoea, headache, nausea, fatigue and weight loss. BNZ-1 This is an intravenous medication (given through the vein) currently still being tested in clinical trials. BNZ-1 is an inhibitor of inflammatory pathways involving interleukins: IL-2, IL-9, and IL-15. These have been shown to be increased in Alopecia Areata. The idea is for treatment to be given weekly for 3 months to adults diagnosed with moderate to severe alopecia areata. Study results are not available yet. Abatacept Abatacept is a fusion protein of cytotoxic T-lymphocyte associated antigen 4 (CTLA-4). It improves inflammation by reducing the activation signals to the white blood cells. It is currently being used for conditions such as Rheumatoid Arthritis, Juvenile Idiopathic Arthritis, and Psoriatic Arthritis. It is also given as an injection under the skin, consisting of weekly injections for 6 months, with an additional 6 months of follow up. It is still being reviewed in a clinical trial for Alopecia Areata and results are currently pending. The side-effects that have been reported up till now are risk of serious infection, injection-site reaction, sinusitis, headaches, and high blood pressure.
Where can I contact the organiser with any questions? Expand You can contact Alopecia UK via email at [email protected] or by phone on 08001017025.
What about accommodation? Expand It is up to yourself to arrange accommodation if you want to stay over at all. Many people often stay in the nearby Premier Inn (Uttoxeter) and Travelodge (Ashbourne).
How can I get there? Expand It is your own responsibility to get to Alton Towers and collect your tickets in time.For any ID requirements for the park, age limits for rides, transport/parking questions or questions about disability, please refer to the Alton Towers website.
Can I meet other attendees beforehand? Expand We will set up a private Facebook group one week before the event and invite attendees to join so they can meet others before the day. We do this with most of our events as we find it helps to break the ice and reduce any nerves. People also find it useful for information and advice.
Where can I contact Alopecia UK with any questions? Expand You can contact Alopecia UK via email at [email protected] or by phone on 08001017025.
Will I receive a physical ticket? Expand No, we won't be posting out any physical tickets. Please bring along your event confirmation email to the event (either printed or digitally).
My friend/partner/carer will be coming with me, do they have to have a ticket? Expand Yes. We appreciate that you might want to bring someone along with you for support, however tickets have already been heavily subsidised so in order to help cover costs, everyone must buy a ticket to attend the event.