# Stories of people affected about rarer types of diabetes



## Josh DUK (Sep 18, 2019)

*Charlie*



Charlie has been living with LADA (latent autoimmune diabetes in adults) since November 1979 and now does promotional stalls and fundraising for us. 


“Being put on insulin was a big hurdle to overcome; having to inject four times a day and trusting myself to do it was the most agonising and mentally challenging thing I’ve ever done.” 


Read Charlie’s story. 


*Ali*



When Ali was diagnosed with Type 3c diabetes as a result of her pancreatic cancer, she didn’t even know what it is. She now wants to raise awareness of this rarer type of diabetes. 


“We need to raise the profile [of Type 3c diabetes], because almost 50 per cent of people with Type 2 diabetes could actually have a form of Type 3c diabetes.”


Read Ali’s story and watch her video explaining her experience of Type 3c diabetes, from diagnosis to treatment. 


*Gareth*



Gareth was diagnosed with neonatal diabetes at just eight weeks old. In 2008, he was offered the chance to go on a trial through Exeter university that could radically change his diabetes treatment. 


“A blood test showed I had the gene mutation for neonatal diabetes, meaning I was eligible for a trial where I was weaned off insulin and onto gliclazide tablets.”


Read Gareth’s story and watch his video about taking part in the trial. 


*Steph*



With a family history MODY (maturity onset diabetes in the young), Steph was diagnosed early. She now wants to raise awareness of this rarer form of diabetes. 


“The most frustrating thing for me is that there’s still a lack of awareness about MODY. People assume I have Type 1 or Type 2 diabetes. Even some doctors assume I must be Type 1 because I take insulin.”


Read Steph’s story about living with MODY and the struggles she has faced along the way.


----------



## Eddy Edson (Sep 20, 2019)

Benny G said:


> Hmmn, type 3c is described as rare and then the article says that 50% of type 2 are possibly wrongly diagnosed and should actually be type 3c. These affected individuals would probably require both injected insulin and enzyme replacement therapy to help replace the lack of pancreatic function and help them regain all the lost weight. They would most likely be diagnosed as type 1 or Lada due to the weight loss and requirement for injected insulin.
> If 50% of type 2 are misdiagnosed  and are really type 3c, that means type 3c is as common as type 2, the only rare part being the diagnosis of type 3c. This would mean every second diabetic person is actually type 3c.
> Perhaps you could cite sources to back up this unlikely claim.



The 50% thing has to be wrong, doesn't it? They should ditch that quote. FWIW, I've seen very tentative estimates of maybe 10%. 

Of course, the overall point stands.


----------



## Northerner (Sep 20, 2019)

Interesting to read Gareth's story about neonatal diabetes. As many know, I'm a bit weird with my version of diabetes  I was diagnosed Type 1 aged 49 but after 4 years of needing both bolus and basal insulin I stopped needing the basal, and haven't needed it since. A couple of months ago I had a c-peptide test which showed I was producing a 'reasonable' amount of insulin on my own - more than that produced by 95% of Type 1s. This suggests I might not actually have type 1, but a monogenic form. I had heard about neonatal diabetes before, but always thought it only occurred in newborns (as the name suggests!) and was permanent. However, I read now that there is a transient form that can manifest as a newborn, but then go into remission, sometimes relapsing in teen years or adulthood. As a baby I know from what my Mum told me that I had a real problem in my first few months of life as I couldn't put on any weight, and I see that 'failure to thrive' is a symptom of NDM - it's possible I had other symptoms. I wonder if it's possible that, with this being so rare, the possibility of NDM wasn't known about? And is it possible to then relapse at age 49? Some interesting questions for my consultant in December!


----------



## mikeyB (Sep 23, 2019)

Type 3c isn’t rare. It’s more commonly diagnosed than T1. The pancreatitis forum demonstrates that. There are more 3c folk on that forum than this.


----------



## billyblue (Oct 15, 2019)

Josh DUK said:


> *Charlie*
> 
> 
> 
> ...



I was wrongly diagnosed with type 2 5 years ago with the wrong medications all this time and lately, my new DR told me i have LADA and started insulin since last month, as per my new DR, if i was treated right from the beginning i probably had the chance to reverse it, how accurate is it?


----------



## Stitch147 (Oct 16, 2019)

My GP strongly thinks that I am MODY but isn't willing to do the genetic testing, so I am just treated as a type 2.


----------



## Wifeypage (Oct 16, 2019)

billyblue said:


> I was wrongly diagnosed with type 2 5 years ago with the wrong medications all this time and lately, my new DR told me i have LADA and started insulin since last month, as per my new DR, if i was treated right from the beginning i probably had the chance to reverse it, how accurate is it?


I was diagnosed LADA last year. It can’t be reversed as it’s a auto immune disease. You were born with it. You can prolong the effects with exercise and eating healthy. I lost lots weight since. I’ve just been put on insulin last week. X


----------



## billyblue (Oct 16, 2019)

Stitch147 said:


> My GP strongly thinks that I am MODY but isn't willing to do the genetic testing, so I am just treated as a type 2.


well I know from my DR that the treatment is different, between all the 3 (LADA, MODY & type 2), not sure how accurate this info is


----------



## billyblue (Oct 16, 2019)

Wifeypage said:


> I was diagnosed LADA last year. It can’t be reversed as it’s a auto immune disease. You were born with it. You can prolong the effects with exercise and eating healthy. I lost lots weight since. I’ve just been put on insulin last week. X



so to be clear, I was Type 2 (probably wrongly diagnosed or its just LADA takes time to show the real face) and now LADA which is similar to type 1

should i expect something new in a couple of years?
any researches which indicate or shows that LADA might develop with years to be something more dangerous ?


----------



## mikeyB (Oct 17, 2019)

Nothing more dangerous than any Type 1, billyblue.


----------



## Wifeypage (Oct 17, 2019)

billyblue said:


> so to be clear, I was Type 2 (probably wrongly diagnosed or its just LADA takes time to show the real face) and now LADA which is similar to type 1
> 
> should i expect something new in a couple of years?
> any researches which indicate or shows that LADA might develop with years to be something more dangerous ?



from what I’ve read and been told through own research is it’s different from everyone. Speak with your DSN about it.  I asked feb last year based on my numbers their rough estimate for insulin they said rough guess 2 years so they were close. 
I’ve always been told it could be 2 weeks, months years or 29 years until you need insulin. 

mine started 5 weeks ago. I came over really I’ll stressed etc checked number they were higher. I got in contact with DSN treat kept an eye I kept blood test diaries etc using the discovery sheets. Got sent for bloods and they showed my hb1ac had risen. Was then put on insulin few days later. 
LADA is misdiagnoses alot of the Time and you can feel in limbo with it many doctors don’t fully understand it. But you were always meant to get it as you were born with it. It’s an auto immune disease that shows later in life. Usually in 40’a apparently but I’m 29


----------

