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.
Can I meet people beforehand? Expand Yes, in a digital sense. As with most of our events we will open a private Facebook group two weeks before the event and invite all attendees to join. We find that this works well as an icebreaker allowing people to introduce themselves and ask any questions ahead of the day. It also generally results in building up the excitement and helping to reduce any nerves!
Is the event fully accessible? Expand Yes. The event will span across three floors however all areas are accessible by lift.
I have a dietary requirement; can this be catered for? Expand We will do our best to cater for specific dietary requirements, however, you must let us know at least 4 weeks prior to the event so we can inform the caterers.
Does the venue have hearing loops? Expand Some of the larger areas/rooms have hearing loops, however the smaller spaces do not. If this is something that may impact your enjoyment at the event, please let us know on: [email protected]
Is the Big Weekend suitable for children? Expand The event is suitable for adults and young people aged 13+. If you are interested in attending events suitable for children with alopecia, our Kingswood Residential, Alton Towers and regional meet-ups are the events for you.
Can I purchase wigs or products from businesses at the Big Weekend? Expand That’s entirely up to you! Some of our businesses will be selling their products at the event itself, whilst others may need some time to order your item.
Can I purchase T-shirts and/or merchandise at the Big Weekend? Expand Yes, absolutely but please note stock is limited.