Invisible illness

[Sarah-38]

Tired of my daughter being invisible. She’s 17 and suffers daily and I feel so helpless as no one seems to give us any answers.

From the age of 12 she’s had episodes where she passes out. She suffers daily with migraines and constant brain fog.

Three years ago she was diagnosed with cold urticaria over time she’s now affected by the sun to. When in the cold/ rain/ wind she is covered in hives. In the sun she comes out with red blood spots on her leg. She has Reynards .

She had a degenerative spine causing shooting pain down her legs and foot.

She had severe asthma and is under GOSH for this. She suffers with dysfunctional breathing so when breathing through her nose her airways close up.

Is in discomfort in her stomach and suffers with cramps.

She’s due to start new meds for her cold urticaria. Asthma is on the strongest dose of inhaler. She’s had an eeg and know that the black outs are not related to epilepsy.

Her bloods show that her white blood count is slightly low, her central Hemoglobin is slightly low and her anti-neutrophil are slightly raised.

I feel at a total loss and feel like I’m letting her down daily. My gp are very little help.

[Hidden]

Hi,

I've not got much in the way of constructive advice but just want to say I think you are supporting your daughter wonderfully. I know what it is like trying to get past the GP to a specialist to be properly investigated but I think you need to insist with your GP that your daughter's quality of life is quite appalling and you would like to be referred to a specialist (I suspect rheumatology may be a good place to start).

I have a lot of sympathy for your daughter as my symptoms started when I was 18 and it was very difficult to see all my friends drift away as I continued to be too ill to go out but remained undiagnosed. My GP was useless and told my father it was all in my head because my blood tests all came back normal. It took 25 years to get a diagnosis of an autoimmune disease that there is no definitive blood test for!

If your GP will not refer then your options are to ask for a second opinion or pay for a private appointment with either a GP or a rheumatologist - not cheap unfortunately, but a private rheumatologist will refer you to their NHS waiting list so you don't have to repeatedly pay out for private appointments.

Keep up the good work, I am sure your daughter appreciates it!

[Amani-A]

Hi Sarah, I’m 21 years old also struggling with an invisible illness, I want to discuss this in my final project and Dissertation at university. Is it okay if I could interview your daughter? and just discuss the struggles she goes through and how she tries to distract herself. If she is interested in doing an interview please contact me

[Merkat90]

Hi so sorry hear your daughter having such horrid time . I have something called mast cell activation syndrome and something called dysautonomia. Think something might help pots uk.which can explain lot more than I can in a flare . And masto uk .doe your daughter have high heart rate on standing ? Does she randomly react to food or medication or weather which sounds like she does all could go with them please have look see if any help any questions msg me any time if can help I will be happy to .

[Melody0fflowers]

I know exactly how you and your daughter feel, I am on the same situation as your daughter, I know how it feels to be Litreally invisible, unfortunately I really believe that children under 18 are neglected a lot with their very real and serious health concerns and issues. I know how you feel as my mum is in the same situation as you, I haven’t got much advice but i hope that when your daughter turns 18 maybe she will get some real help, the best thing to do is constantly call the GP, and never give up asking them to do something. And I hope you know that you are doing amazing! Being a constant reassurance to you daughter would definitely help her emotional and mental health, it helps me a lot when my mum comforts me and tells me we can get through it. Xx