<div>Hi, my name is Christina Mum to Faye.
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<div>Faye has juvenile dermatomyositis, her disease is classed as severe and isn't responding to current medication.
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<div>There is a new treatment that she has been approved for called a JAK inhibitor.
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<div>we just don't have the funding to start the treatment.
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<div>and with each passing day, Faye is deteriorating.
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<div>we are asking for help to fund the first 2 months of treatment until the NHS can push through the required funding.
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<div>Money raised will go directly to Faye's treatment, Tests and Travel to Doctor's Appointments. should there be any leftover or not needed we will put this towards private physio to help her regain her strength.
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<div>Juvenile dermatomyositis (JDM) is a rare muscle disease affecting approximately three children in every million per year.
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<div>Muscle weakness and skin rashes are the main symptoms of juvenile dermatomyositis and it affects every child differently – some experience a mild form of the disease while others display a more severe disease progression.
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<div>Juvenile dermatomyositis is thought to be an autoimmune disease, but we do not know what causes it.
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<div>In healthy adults and children, an immune system is a group of cells that protects the body from infection. In those with an autoimmune disease, there is a defect in the immune system that causes it to turn against the body’s own tissues. This process damages the body instead of protecting it.
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<div>Many researchers worldwide are looking into the cause of JDM and some believe that there is a genetic predisposition to autoimmune diseases. Children afflicted with JDM may have a relative who suffers from another autoimmune disease such as diabetes or arthritis.
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<div>The autoimmune disease usually presents itself when a ‘trigger’ causes the body’s immune system to overreact. Although research has not identified any one specific trigger it is believed triggers could include viruses or an environmental hazard.
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<div>The main symptoms of juvenile dermatomyositis are weak and painful muscles, rashes, tiredness and irritability. Some children may also have joint pains.
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<div><strong>Weak muscles</strong>
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<div>The muscles that are affected the most are those near the trunk of the body: the upper arms, the thighs, the neck and the trunk itself. Other muscles can become weak and children can have difficulty swallowing, or develop changes in their voice. Occasionally there is inflammation in the gut, which can cause bowel problems. Children with JDM can have difficulty getting up from bed, climbing stairs and getting up from the floor or from a chair. Walking and running can become challenging and exhausting. Muscle weakness can be assessed by doctors using specific outcome measures such as the Childhood Muscle Assessment Score and the MMT8.
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<div><strong>Skin rash</strong>
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<div>The skin rash in JDM usually occurs on the face, knuckles, elbows, knees and ankles. The rash may appear before, after or at the same time as the muscle weakness. Sometimes the rash is so faint that it is not noticeable. The rash appears as a red-purplish colour on the eyelids and cheeks, whereas the rash looks like red dry skin patches over the knuckles, elbows and knees. The fingernails and the nailbeds may take on a pinkish colour as well.
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<div>Often, children have Gottron’s patches, which are red/violacious raised rashes that can occur over the finger joints, elbows, knees and ankles.
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<div>Other rashes can occur over the trunk, arms and legs. Rashes may also be triggered by sunlight.
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<div><strong>Fatigue</strong>
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<div>With JDM, children can tire easily and sometimes can only walk short distances. Children may need to rest often and lack the energy for normal activities. It can become difficult for children to keep up with friends.
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<div><strong>Irritability</strong>
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<div>You may notice the child seems quite irritable and their behaviour may become more difficult than normal.
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<div><strong>Fever</strong>
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<div>Sometimes, children with JDM can get fevers, particularly in the early stages of the disease or before treatment is given.
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<div>Faye also suffers with:
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<div>The following symptoms of juvenile dermatomyositis are less common, but important to understand:
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<div><strong>Ulcers</strong>
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<div>Ulcers can occur in the skin, and can look like sores within the skin rash. They can be deep or on top of the skin and they also range in size. The ulcers can be painful, but will usually go away with treatment.
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<div><strong>Contractures</strong>
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<div>Contractures are shortened muscles that cause a joint to stay in a bent position. These can occur due to lack of movement or due to muscle inflammation.
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<div><strong>Calcinosis</strong>
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<div>Some children with <strong>JDM </strong>can develop calcinosis, which are small lumps of calcium that form under the skin or in the muscle. They may feel like little rocks under the skin and can range in size from a dot to a large pebble.
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<div><strong>Other symptoms</strong>
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<div>Some children with JDM have problems with joints, tightness of the skin, and painful fingers in the cold; some of these problems can happen in other diseases as well like a condition called lupus.
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Faye needs funding for treatment

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Just £925£ to go! Make an impact.

Faye needs funding for treatment

Just £925 to go!
Make an impact.