HELP!!!...Life Changing Cortisol Pump

Subcutaneous hydrocortisone infusion pump

Hi, My names Steve and I'm fundraising with the help of my family & friends for a life saving treatment for a rare condition known as Secondary Adrenal Insufficiency .

I was diagnosed in 2017 with Secondary Adrenal Insufficiency...a condition that was subsequently diagnosed following long term use of oral steroids. Appoximately 12 years previously.

This was initially given o treat an inflammatory bowel disease ( Ulcerative Colitis ) however, this caused secondary significant complications!!!

Unfortunately my adrenal glands went into hibernation ( which is common in long term steroid patients ).

Subsequntly the hypothalamus gland was no longer sending a signal to my adrenal glands, to release the stress hormone cortisol, so unfortunately after hibernation they couldn't be woken up...this left me steroid dependent and shackled with a life threatening condition.

I now have to wear a medical alert bracelet and carry an emergency injection kit around 24/7 in case of adreanl crisis!!!

I now also have to take oral medication 6 times per day... simply to stay alive.

My phone alarm is set my every 4 hours to remind me to take my medication on time to keep me safe.

I have to wake every morning at 3am to take a dose...just to ensure I can get out of bed on a morning.

Unfortunately due to having an inflammatory bowel disease, im no longer absorbing the right amount of oral steroids into my digestive system.

Instead it's formulated in my fatty tissue and casuing inflammation all around the body.

This is also having a significant impact on my overall well-being.

My blood Glucose is raised...my blood pressure and cholesterol are also raised.

I'm doing everything physically possible to help myself.

I've joined the local council run gym and swimming baths run by ASPIRE health care.

I have a wonderful nutritional expert Keilly and her Partner who are supporting me on this journey 24/7 and I can't thank them enough in their unwavering support at this pivotal time in my recovery!

I now have a diabetes nurse that is helping me along with a very supportive Endocrinology consultant and Gastrointestinal Team.

Sadly my condition has recently become unmanageable at home and im in a very vulnerable position, I am no longer safe to live alone, so I have moved back home with my mother until my health is stable.

I've had 3 episodes of collapse due to adrenal crises in a 6 week period.

My body simple can't handle the additional stress of Acute illnesses on top of the normal day to day stress of life!

Sadly I've found myself on the floor with nobody else around and it's been a real eye opener to the severity of this illness.

Unfortunately I've also had 3 hospital admissions as a result of the adrenal crisis and my life has become unmanageable!!

My Endocrinology consultant agrees that I have a problem with malabsobtion however, treatment via the NHS is very limited at the moment.

Subcutaneous injections are normally only used in case of an emergency as its difficult to give the correct dose via a syringe on a daily basis, hence the need for oral medication.

The development of the subcutaneous hydrocortisone infusion pump as been groundbreaking. Its an adaptation of a diabetes pump that's been used for many years to with considerable amount of success!!!

I have recently joined a fb group called

" Cortisol pump users UK "

I have spoken to a few folk who have been fortunate to be given the pump and the results have been a resounding success.

Most patients express how life changing the introduction of the pump as been.

" NIGHT & DAY " ...described by most.

Currently the only option available is to go through the only UK private hospital that is approved to provide the subcutaneous hydrocortisone pump and that's The London Clinic.

I have spoken to Phillip the endocrine nurse who's arrange for me to have a consultation in April

Due to the frequency of episodes of adrenal crises I've suffered in such a short period of time. The Endocrinology consultant believes I'm a very strong candidate for treatment via a subcutaneous hydrocortisone pump.

Unfortunately this comes at a considerable expense!

The pump and consumables are approximately £6,000 upfront

The initial consultation, a full subcutaneous day curve study, a 6 week trial of the pump and ongoing treatment is expected to be around £4000 with a further £3000 annually thereafter, for medication and consumables

Unfortunately over the past 12 months I've been virtually bed bound. I spent the months of June & July stuck in bed and it was at that point I made my first enquiry regarding the cortisol pump.

The realising hit me that I was existing and no longer living?

I have had to give up my hobby of training gundogs...which those who know me, knows I'm really passionate about .its sadly a huge void in my life, the first time without a dog since 2002 is very strange.

However, it came to the point during the summer of 2024 that I could no longer even walk the dogs around the local country park. It was at that point I realised

I needed to stop being a martyr and reach out and ask for help!

So unfortunately I had to make the really difficult decision to rehome 3 dogs.

The poor dogs deserved the quality of life I could no longer give them. I had worked hard and given them all the energy I had. They deserved to be given the opportunity I couldn't afford them due to my ongoing constraints!

I also needed to take some time out and try to get my own health back on track. Unfortunately my illnesses had become life threatening!

Thankfully I managed find them wonderful forever homes with very good friends and well regarded handlers in the gundog community ❤️

My goal is to try and get my life back on track ,with the help of a subcutaneous hydrocortisone pump and hopefully return next year to the hobby that I love

Thats the reason I'm asking for help in supporting my application for a pump!

I also plan to help others by raising awareness and to push for funding via the NHS... so this treatment can be made available for many more patients that are hiding in the shadows and not just the few.

Thanks for taking the time to read my brief story!!!

Any donations, however small would be very welcome!

It will go along way in helping myself and many others recovering from this debilitating illness

Thanks in advance

Treatment overview

Addison’s disease or adrenal insufficiency can have an impact on your health and well-being. However, with the right balance of medication, you can control your Addison’s or adrenal insufficiency instead of it controlling you!!!

The London Clinic offers the very latest technology and care by world-leading endocrinologists to ensure you stay well and live an active and productive life.

The London Clinic is the only private hospital in the UK to introduce innovative subcutaneous hydrocortisone infusion pumps for patients affected by Addison's disease or adrenal insufficiency.

Insulin pumps have revolutionised diabetes care, and The London Clinic offers a similar system for people living with Addison's disease or adrenal insufficiency.

Research indicates that using a high-tech pump to infuse hydrocortisone around the clock could more closely replicate your body’s natural cortisol release and improve your quality of life.

The expert endocrinology team can provide the very latest pumps, a tailored training programme, and the support you need to get your Addison’s disease or adrenal insufficiency under control.

The expert endocrinology team can provide the very latest pumps, a tailored training programme, and the support you need to get your Addison’s disease or adrenal insufficiency under control.

I would like to thank everyone for your very kind support ❤️

Steve xxx