Millie's Story / RareDisease Charity
Donation protected
“Ehlers Danlos Syndrome is a rare genetic disorder that has a drastic impact on the way an individual can live their life.” If you google the condition one of the first things that will come up in your search is “What is the life expectancy of an individual suffering from Ehlers Danlos Syndrome”
As a few of you may know, I have been on a long journey of health complications and have now been officially diagnosed with Ehlers Danlos Syndrome, Chronic Fatigue and Dysautonomia & POTS. I am now registered disabled due to the severity of these conditions. All of these conditions have far too many symptoms to list, however they have severely impacted my day to day life, from being in constant pain in every inch of my body- to excessively sleeping to carry out simple tasks like having a shower.
It may not look like I struggle, but those of you close to me/who I live with see the impact it has (plus I have learnt to hide it). I’ve got to the point where I’m really struggling and this is where I need your help… It would be amazing if you could take the time to read my story.
The conditions I mention above do not have treatment plans. There is no “helpful” medication, however there are opportunities to go to chronic illness ‘camps’ where there are specialists who will help you learn specific techniques to reboot your body to be as ‘normal’ as possible. So what I am asking for is ANY donations, big or small, which will be greatly appreciated to help me receive potentially life changing health care.
This treatment can (hopefully) reset my autonomic system, making it be in sync, so that I can function as I should at this age. I am so grateful that there are professionals that have put their time into creating treatments like this and provide proof it works. I am dying to try it! Unfortunately this treatment is not seen as “set-in-stone medical treatment” as there’s not enough research on it yet, so it comes at a very high cost.
Many of us know someone suffering from a chronic or autoimmune condition. The charity raredisease.org.uk helps people like me by funding research for treatment for many conditions and hopefully one day this will be included in NHS care. Due to this I would like to donate 30% of my funds to them, of which an additional 25% will be automatically donated through gift aid!
Out of my conditions, Dysautonomia has the greatest impact. I am the youngest of only 22 people to be formally diagnosed with this in the UK. My mum approached the Medical Director where she worked at St Barts Hospital and by pure luck I was put forward to have the testing done and be part of their unique research program.
It affects the entire autonomic nervous system, which means failure of both the sympathetic and parasympathetic components - In basic terms, my whole body is out of sync, nothing works the way it should (to say the least). A massive pain in the ass! I find new symptoms appearing everyday, recently forcing me to make more trips to the hospital. Living with this hugely impacts my mental health (which this charity also puts its funds towards). Along with a lot of knock downs within the last year, It’s been difficult to come to terms with the fact I can’t do things I used to be able to, or silly things like see everyone enjoy the uni life when I simply don’t have the energy or mental capacity.
To give you an insight to my former life I use to be extremely sporty and active. Doing cheerleading, gymnastics, going to the gym. But unfortunately things have changed and i’ve been told I cannot do these things anymore.
With chronic invisible illness, everyone is usually quick to assume it’s overreacting or “fishing for sympathy” (believe me I wish it was), But it’s far more than I can even explain myself. I’m not looking for miracles or amazing health, just a chance to do simple day to day things I can’t currently do and not be in constant pain.
I won’t bore you with any more facts and figures or try to get sympathy as that is not the aim of this. I hope this backstory will help you all to understand how much this help would mean to me so I can live my life to the fullest and have a happy and healthier future. I also hope that by publicising my story it may help others like me pre or post diagnosis to not feel alone and spread awareness.
Remember EVERYONE is fighting a battle no one knows about, so be kind, be respectful and be there for your loved ones :)
Thank you all,
Millie x
For info on the charity:https://www.raredisease.org.uk
https://rarediseases.info.nih.gov/diseases/2081/hypermobile-ehlers-danlos-syndrome
https://en.wikipedia.org/wiki/Dysautonomia
As a few of you may know, I have been on a long journey of health complications and have now been officially diagnosed with Ehlers Danlos Syndrome, Chronic Fatigue and Dysautonomia & POTS. I am now registered disabled due to the severity of these conditions. All of these conditions have far too many symptoms to list, however they have severely impacted my day to day life, from being in constant pain in every inch of my body- to excessively sleeping to carry out simple tasks like having a shower.
It may not look like I struggle, but those of you close to me/who I live with see the impact it has (plus I have learnt to hide it). I’ve got to the point where I’m really struggling and this is where I need your help… It would be amazing if you could take the time to read my story.
The conditions I mention above do not have treatment plans. There is no “helpful” medication, however there are opportunities to go to chronic illness ‘camps’ where there are specialists who will help you learn specific techniques to reboot your body to be as ‘normal’ as possible. So what I am asking for is ANY donations, big or small, which will be greatly appreciated to help me receive potentially life changing health care.
This treatment can (hopefully) reset my autonomic system, making it be in sync, so that I can function as I should at this age. I am so grateful that there are professionals that have put their time into creating treatments like this and provide proof it works. I am dying to try it! Unfortunately this treatment is not seen as “set-in-stone medical treatment” as there’s not enough research on it yet, so it comes at a very high cost.
Many of us know someone suffering from a chronic or autoimmune condition. The charity raredisease.org.uk helps people like me by funding research for treatment for many conditions and hopefully one day this will be included in NHS care. Due to this I would like to donate 30% of my funds to them, of which an additional 25% will be automatically donated through gift aid!
Out of my conditions, Dysautonomia has the greatest impact. I am the youngest of only 22 people to be formally diagnosed with this in the UK. My mum approached the Medical Director where she worked at St Barts Hospital and by pure luck I was put forward to have the testing done and be part of their unique research program.
It affects the entire autonomic nervous system, which means failure of both the sympathetic and parasympathetic components - In basic terms, my whole body is out of sync, nothing works the way it should (to say the least). A massive pain in the ass! I find new symptoms appearing everyday, recently forcing me to make more trips to the hospital. Living with this hugely impacts my mental health (which this charity also puts its funds towards). Along with a lot of knock downs within the last year, It’s been difficult to come to terms with the fact I can’t do things I used to be able to, or silly things like see everyone enjoy the uni life when I simply don’t have the energy or mental capacity.
To give you an insight to my former life I use to be extremely sporty and active. Doing cheerleading, gymnastics, going to the gym. But unfortunately things have changed and i’ve been told I cannot do these things anymore.
With chronic invisible illness, everyone is usually quick to assume it’s overreacting or “fishing for sympathy” (believe me I wish it was), But it’s far more than I can even explain myself. I’m not looking for miracles or amazing health, just a chance to do simple day to day things I can’t currently do and not be in constant pain.
I won’t bore you with any more facts and figures or try to get sympathy as that is not the aim of this. I hope this backstory will help you all to understand how much this help would mean to me so I can live my life to the fullest and have a happy and healthier future. I also hope that by publicising my story it may help others like me pre or post diagnosis to not feel alone and spread awareness.
Remember EVERYONE is fighting a battle no one knows about, so be kind, be respectful and be there for your loved ones :)
Thank you all,
Millie x
For info on the charity:https://www.raredisease.org.uk
https://rarediseases.info.nih.gov/diseases/2081/hypermobile-ehlers-danlos-syndrome
https://en.wikipedia.org/wiki/Dysautonomia
Organizer
Millie Woodman
Organizer
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