I don't want my photo taken and shared publicly, what can I do? Expand We want everyone to come along and have a good time at Alton Towers and don't want anyone worrying about photos of them going out publicly via Alopecia UK. As mentioned in our Terms and Conditions we will be taking photos at this event and usually have a photographer or two following some of the groups round the park. We can't guarantee that you won't get captured on camera, however, on the day you will be able to register for ‘no photos’, this will entail taking one photo of you on the day so we can identify you in our photos afterwards. We ask that you make a conscious effort to remove yourself from posed group photos where possible as these will be used publicly and to advertise future events. It is your responsibility to seek an AUK staff member on the day of the event and explain that you do not wish to be in photos. Once we have your photo for our records, we will use this to ensure your image is removed or blurred out from our photos before anything goes out publicly on Alopecia UK website and social media. (Please note that we cannot guarantee that other attendees won't take and share pictures on their own social media. Please see Alton Towers own photo policy for how they might use any of their photos taken round the park).
What if I require extra assistance due to a disability? Expand The Ride Access Pass is a system Alton Towers have in place to help guests who require extra assistance or are unable to queue due to a condition or disability. This allows them access to the rides via a queuing system for themselves and up to three people (one of which must be age 14+). The Ride Access Pass removes the need for our guests to wait within the main ride queue lines, and enter by a dedicated entrance for Ride Access Pass users. You must apply for a Ride Access Pass in advance directly with Alton Towers. Please see more details here: Ride Access Pass | Alton Towers Resort
Do we have the whole park to ourselves? Expand No, unfortunately not! Alton Towers is a huge theme park and it is not possible to book exclusive access (unless, we imagine, you have millions of pounds!) The theme park will be open to the general public. Our event allows a big group of people with alopecia to meet up and go round the park in a group. See here for more information on the day.
Managing Expectations and Emotions Expand Reactions from Others We all know that looking a bit different can sometimes result in people becoming curious and looking for that little bit too long! While we’re sure it will generally all be fine, we’re mentioning this because if you are going out for the first time without any wig/hat/headwear then you might get a reaction from others that you are not used to and we want you to be prepared for it. Occasionally people stare (or say stupid things), typically because they do not understand or it’s something they’ve never seen before. Take this as an opportunity to educate! Just give them a nice big smile and point at your t-shirt! If anyone asks questions, just answer them. Once they know, they know. The more we educate people, the less of an issue it is. We haven't experienced any problems at our previous Alton Towers events and generally people are just interested in what we were doing. If you get upset by something during the course of the day or afterwards, feel free to give us a ring. We're sure once we’re all together that we’ll all be supporting each other, but you can call us anytime and we’ll do our best to help, even if it’s just to listen. It's important to remember that there is no pressure to have your alopecia visible to others. Many people choose to wear hats, scarves or wigs on the day. The day provides a supportive atmosphere to do as you wish. Nerves If it is your first time coming along to an event like this you might be really nervous and not know what to expect. We assure you that you are not the only one feeling like this and there will be many others trying to talk themselves out of it! A small step out of your comfort zone and, once you get there, you’ll be fine. What you get out of the day can depend on what you put in however so please get involved and just chat to people or say hello. You’ll keep spotting blue t-shirts as you go round the park and if you join a group it gives a nice opportunity to chat to others who will really know how you’re feeling. Everyone is there to support each other. It might be enough for you to just see other people with alopecia and, if so, that’s great. If you struggle at all on the day then please try and find a volunteer who can help. Afterwards Alopecia is something that gives us many ups and downs in life and sometimes we can keep things to ourselves or put on a brave face (whether you are the person with alopecia or a parent/friend/partner). If you are the only person you know with alopecia or being affected by someone close to you having alopecia, suddenly meeting so many others who understand the journey you’ve been on can get you feeling quite emotional. It’s also a big thing to do putting your alopecia on show when you don’t normally (not that this is expected of anyone). All of this, mixed together along with the adrenalin of going on some rather scary rollercoasters, might make you feel a bit all over the place. A big high, and then possibly feeling a bit drained afterwards. Basically, what we're saying is, it might make you want to have a bit of a cry at some point! And if it does, that is totally fine and perfectly normal. Just go with it. If you’ve got someone who can give you a big hug while you do then great, and if you don’t just give yourself a big hug and remember how flaming fantastic you are! And remember the Facebook group is there for you to share anything you need to share or get any support that you need afterwards. Don’t forget that you can email or call us if you need us too.
Contact immunotherapy (DPCP) Expand Contact immunotherapy is a form of treatment designed to induce a local allergic skin reaction (contact dermatitis) that stimulates hair re-growth by “distracting” the immune system from attacking hair follicles. In the UK, diphenylcyclopropenone (DPCP) is the most used contact immunotherapy treatment. 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 being applied. After sensitisation, a much lower concentration of DPCP is applied weekly to the affected areas of the scalp. Usually half of the head is treated until hair growth is demonstrated, then the whole scalp is treated. The concentration of DPCP is gradually increased over time, depending on the level of reaction. This type of treatment requires prolonged courses, sometimes more than one year. There are only a small number dermatology departments in the UK which offer this treatment. Contact immunotherapy might be prescribed for patients with the following alopecia types: alopecia areata (including totalis and universalis)
Systemic immunosuppression Expand Systemic immunosuppressant medications can help to suppress the immune system to reduce any inflammation occurring around hair follicles. In the UK, methotrexate, ciclosporin and azathioprine are the most used systemic immunosuppressants for alopecia. Before starting an immunosuppressive treatment, a number of baseline tests are usually required. These tests may include blood samples to check liver & kidney function, blood count, blood fats, for evidence of serious viral infections (hepatitis & HIV) and tuberculosis (TB). Evidence that you are immune to the chickenpox virus is also checked. A chest x-ray may also be carried out. You are likely to be advised to have a vaccination for pneumococcal infection, annual flu vaccines and covid vaccines. Women who can become pregnant may require to be on an effective form of contraception if sexually active, as some immunosuppressive treatments (e.g. methotrexate) should not be taken during pregnancy. Regular blood tests are essential to monitor the effectiveness of the treatment and check for any potential side effects. Systemic immunosuppression might be prescribed to patients with the following types of alopecia: alopecia areata (including totalis and universalis), frontal fibrosing alopecia (FFA), lichen planopilaris (LPP).
Minoxidil Expand Topical minoxidil is licensed for the treatment of androgenetic alopecia (pattern hair loss) in men and women. It keeps hair follicles in the growing phase (anagen) for longer and restarts the growth phase of resting (telogen) follicles. It is not clear exactly how minoxidil causes these effects. The treatment is unlikely to be helpful if the scalp is completely bald. Minoxidil is not prescribed for patients with androgenetic alopecia through the NHS. Topical minoxidil is sometimes suggested for other types of alopecia ‘off-label’ as an ‘adjuvant’ treatment – meaning something that supports the effect of another treatment. Minoxidil might be offered alongside another treatment to improve hair density. Oral minoxidil tablets are sometimes prescribed in a low dose to treat severe female pattern hair loss. Minoxidil is a blood pressure tablet and there can be side effects from taking the drug as a tablet. It is also sometimes prescribed as adjuvant therapy (see above) for other types of alopecia. Minoxidil might be suggested for people with the following alopecia types: androgenetic alopecia (male and female pattern hair loss), alopecia areata, lichen planopilaris (LPP), frontal fibrosing alopecia (FFA), central centrifugal cicatricial alopecia (CCCA), traction alopecia.
Antiandrogen treatments Expand Antiandrogen treatments are sometimes used in the treatment of male pattern hair loss. In men, testosterone is converted by an enzyme called 5 alpha reductase (5AR) to dihydrotestosterone (DHT) in hair follicles. Susceptible follicles react to the hormone by producing smaller finer hairs. Antiandrogen treatments, such as finasteride and dutasteride, can help to lower the level of DHT and reduce the androgenic effect that leads to hair loss. Antiandrogen treatments can be prescribed via a private prescription but not through the NHS. There have been concerns about the side effects of these drugs. Older men taking drugs such as finasteride must let their doctor know if they have a blood test for their prostate (PSA), as these drugs can artificially lower the levels of this protein in their blood. The role of androgens in causing female pattern hair loss is uncertain. However, antiandrogen treatments can be used to treat female pattern hair loss, although usually most women have no evidence of excessive androgens. In women, antiandrogen treatments which may be used include oestrogen-containing oral contraceptive pills and spironolactone. Antiandrogen treatments might be prescribed for people with the following alopecia types: androgenetic alopecia (male and female pattern hair loss)
Antibiotics Expand Antibiotics can help some people with scarring alopecias, particularly when the condition is associated with bacterial infection or inflammation. Antibiotics can reduce the bacterial load in conditions where bacteria play a role in inflammation and follicular damage. Some antibiotics, particularly tetracyclines, have anti-inflammatory properties that can help to reduce the inflammation associated with scarring alopecias. Antibiotics used to treat scarring alopecias include tetracycline and doxycycline. Antibiotics might be prescribed to people with the following alopecia types: frontal fibrosing alopecia (FFA), lichen planopilaris (LPP), central centrifugal cicatricial alopecia (CCCA), dissecting cellulitis, folliculitis decalvans.
Topical calcineurin inhibitors Expand Topical calcineurin inhibitors can reduce inflammation and reduce local immune responses in people with scarring alopecias. These medications may help to halt the progression of the condition but will not be able to restore any lost hair. They may also help to manage symptoms like itching, redness, and inflammation. As they are not steroids, they can be safely used on the face. Topical calcineurin inhibitors might be prescribed for people with the following alopecia types: frontal fibrosing alopecia (FFA), lichen planopilaris (LPP), central cicatricial centrifugal alopecia (CCCA)
Hydroxychloroquine Expand Hydroxychloroquine is an antimalarial drug which can reduce inflammation. It reduces the activity of immune cells and helps to reduce the autoimmune and inflammatory processes that lead to follicular damage in scarring alopecias. Regular follow-ups are essential to monitor effectiveness and side effects. Prolonged treatment with higher doses of this drug can rarely cause damage to the eyes. Hydroxychloroquine might be prescribed to people with the following alopecia types: frontal fibrosing alopecia (FFA), lichen planopilaris (LPP), central centrifugal cicatricial alopecia (CCCA).
Prostaglandin analogues Expand Prostaglandin analogues are used to treat glaucoma. A side effect of these medicines is the darkening, thickening and lengthening of eyelashes. As such, some dermatologists will offer topical prostaglandin analogues for the treatment of eyelash or eyebrow loss in people with alopecia areata where eyelashes/eyebrows have been affected. Prostaglandin analogues include latanaprost and bimataprost. When treating eyelashes, the treatment is only applied to the skin of the upper eyelid margin at the base of the eyelashes. There is the possibility of irreversible discolouration of the iris and darkening of the skin of the eyelids. Prostaglandin analogues might be prescribed to people with the following alopecia types: alopecia areata (where eyelashes or eyebrows are affected); frontal fibrosing alopecia (FFA - where eyelashes or eyebrows are affected)
Low level laser light treatment Expand Low level laser light (LLLL) treatment may help improve hair growth. It is not clear how the treatment might work but it may promote the growing (anagen) phase of the hair cycle, resulting in longer and thicker hairs. There are different types of devices which deliver LLLL such as caps, helmets and combs. The devices can be expensive and the treatment needs to be used 3 - 4 x per week on a regular basis. The treatment is usually well tolerated but mild scalp irritation can occur. Low level laser light treatment might be suggested for people with the following alopecia types: androgenetic alopecia (male and female pattern hair loss)
How can Alopecia UK help me to meet others with alopecia? Expand Alopecia UK specialises in peer support. We understand the importance of being in touch with others who understand the alopecia journey. We facilitate this in the following ways: Private Facebook Groups Our busiest peer support spaces are our private Facebook groups, with lots of daily content on different topics in our main group. FIND ALL ALOPECIA UK PRIVATE FACEBOOK GROUPS HERE Online Groups We host online support meetings, perfect for those who either cannot get along to a face-to-face meeting, or who perhaps prefer meeting people online. DISCOVER ONLINE GROUP OPTIONS HERE Local Support Groups Alopecia UK has face-to-face support groups across the UK, in cities and towns where we have a volunteer willing to lead a group. FIND YOUR NEAREST SUPPORT GROUP HERE Events We host regional and national events which provide an opportunity to meet others who have experience with alopecia. Find Alopecia UK events here
What age does my child need to be? Expand This event is suitable for children with alopecia aged 7-17. Children under the age of 7 may be welcome to attend but may not be able to take part in most of the activities due to their size. Please contact [email protected] to discuss further . Our booking will have private access to a Yurt tent on our campsite that will be open to those who can't or don't want to take part in any activities. We will bring along some arts and crafts and small games for inside the Yurt.
What about accommodation for the weekend? Expand Your accommodation for both Friday and Saturday night are included in the price of your ticket. Which accommodation you choose to stay in is down to your choice and what is available. You can see accommodation options here.
Do I have to bring my email confirmation to the event? Expand Yes you need your email confirmation (either printed or digitally) for entrance to the event.
I have ordered a T-shirt and/or merchandise. Will I receive these in the post? Expand No. T-shirts and merchandise will be available to collect at any point during the Big Weekend from the Alopecia UK stall. Please bring with you your confirmation email (either printed or digitally).
Does Alopecia UK accept hair donations? Expand Alopecia UK does not accept hair donations. Being a small charity, we do not have the resources to process hair donations. There is a charity called the Little Princess Trust (LPT) that accept hair donations and provide free wigs to children and young adults aged 24 and under with medical hair loss, including cancer and alopecia. Some individuals who cut their hair as a way of raising awareness, ask their family and friends to sponsor them for the haircut. Many choose to do this to raise much-needed funds for Alopecia UK, whilst donating the hair donation to Little Princess Trust. This is a great way to support two causes.
How do I set up a fundraising page for Alopecia UK? Expand It is simple to set up a fundraising page on our website. Just follow the instructions provided and we will approve your page as soon as we can. Create your fundraising page here. If you set up your page on a weekend, you will need to wait until the next working day for your page to be approved. Alternatively, if you prefer the Justgiving platform you can set up a fundraising page with them here. We encourage fundraisers to set up pages on our website because the fees are lower than Justgiving. We are happy to welcome pages on either platform.