Molly’s Story

From Rachel Pegler  –  My daughter Molly has hypopituritsm She takes thyroid medication, growth hormone and hydro-cortisone this pituitary condition was undiagnosed for 14 years, she has suffered immensely as a baby and child.

Molly now has chest physiotherapy, a pep mask and autogenic drainage therapy to prevent chest infections when she gets coughs and colds. Because of the recurrent chest infections / pneumonia and general deterioration from a simple cold each time she had one (every 3 to 4 weeks for her whole life) Molly is also now allergic to the main 4 antibiotics because her body has had too many of them. She was always treated for the symptoms and not the cause, it was presumed that she had a chest / lung problem. Each school year molly’s attendance has only been around 75 % last year it was 25% this has affected her education and friendships massively. Molly’s hands are covered in small white scars from the many blood tests and cannula’s she has had over the years, she also has some damage / scarring to her lungs and a low immune system.  As well low self confidence and a fear of hospitals & needles. Family holidays have always been short and very limited because of molly’s poor health. 

She has missed every single Christmas party she has ever been invited to because of illness. She does not have a normal life like other teenagers of her age because she is ‘still’ poorly due to 15 years without correct treatment and medication, it is going to take quite some time to get her back to any kind of healthy.
The whole family that of her brother and sisters lives / grand parents etc have been affected also because of the constant strain and worry her debilitating health has caused. 

All of this trauma and upset could have been avoided if she had been diagnosed with pituitary failure (hypopituritism) when she was a baby.  Molly is now on life saving steroid replacements, thyroid medication and growth hormone injections, her body could just not get over illness and did the best it could to survive, had she been diagnosed she would probably have led a relativity normal life. This is the biggest regret i have in my life.
Molly has been under the care of as many as 9 consultants and many hospitals all of her life but was only referred to endocrinology at the age of 14. She is very lucky to be here.

As a mum i feel desperately sad about this and have now discovered an underground world where people are dying, are not being given treatments they deserve and are on average taking between 5 and 10 years of debilitating health to get diagnosis. 

I have started a campaign called fight for flight which for now is concentrating on the importance of diagnosing and treating adrenal insufficiency, i have written to every ambulance trust in the uk about updates of protocol and have had many good responses, they are circulating my posters and are all very keen to keep adrenal insufficiency what ever its cause at the fore fronts of their minds, there have in the past been to many deaths where patients were not given the emergency injection on time because medical professionals were not aware of the condition. 

We now have good steps forward in producing a quick pen device for this emergency injection and a 10,000 strong signature petition should the development come in to any difficulty. Misdiagnosis of Adrenal insufficiency is dangerous but very common, awareness and research and newly developed medications is vital to survival of these people affected. Although Molly has now also developed ME because her body was so exhausted from not having the correct medications for so long she will be ok but there are other people out there who may not be as lucky. Adrenal insufficiency can kill, it has to be made aware of, please join me on my face book page saving lives for steroid dependents, on there is a wide range of explanation posters and information to download and share. 

Thank you so much.

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4 COMMENTS

  1. My deepest and most tender hugs to Molly and you! I understand the frustration to a point but not 14 years . Granddaughter was diagnosed in NicU but only after 1 month and on the verge of death.

  2. Can you please post a link for the petition so that I can sign it, as well as help spread the word!!! I think you are doing something incredible even though it cannot take all the trials and tribulations you have experienced in you and your families lives, you are changing the world…….one person at a time!!! Thank you!!

  3. Rachel and Molly, I’m sending hugs and prayers from the US. I’m hypopit as well. Undiagnosed for many, many years. I would like to follow Molly’s progress. If you have a Facebook page or website, please post a link. Hugs to you both.

  4. My hearts breaks for you and Molly. I feel your pain as my daughter also has PHP. Thank you for your story and I would love to sign your petition but I’m unsure how. I agree completely that we need to raise awareness. I’m trying to raise awareness here in Canada but I’m uncertain where to begin. I’ve contacted the BC Ambulance Assc and waiting for a call back regarding their protocol. It’s a start…. Any suggestions for me would be greatly appreciated. Thanks and hugs and love to you and Miss Molly XX

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