The Panel consists of 15-20 patients with type 1 or type 2 diabetes. The purpose of the panel is to involve patients in treatment at Steno and give patients a public voice.

Steno Patient Panel

Steno Patient PanelThe Steno Patient Panel consists of 15-20 patients with

type 1 or type 2 diabetes. The purpose of the panel is to

involve patients in treatment at Steno and give patients

a public voice. Members speak at conferences, meetings

and press events, and give advice in areas such as pa-

tient-provider communication, networking and new tech-

nologies that can make diabetes easier to live with.

PerSonal exPerience of diabeteS

The members of the panel have wide-ranging experience

of diabetes. Some are on an insulin pump, some have had

pregnancies with diabetes, while others have problems

with weight or complications in the feet, eyes, kidneys or

heart. This diversity of individuals and experience helps to

give a full picture of life with diabetes.

book a SPeaker

All panel members are available to talk independently

about their life with diabetes, starting from a number of

key questions: How was I diagnosed with diabetes? How

did the disease change my life? What needs and challeng-

es need to be addressed for a good life with diabetes?

Each member can also introduce and discuss a number of

special topics based on personal experience. Read more

about these special topics and the panel members them-

selves below.

To book one or more members of the panel, please con-

tact Anette Laursen, Steno Education Center, at anel@

steno.dk. For each talk, payment of one day’s loss of earn-

ings at a rate of DKK 2,000 plus travel costs is required.

The talks can vary in length. To be sure you get the desired

panel member, please book at least a month in advance.

The panel are not able to answer medical questions and

can take part only in educational and advisory activities.

Camilla Rossil was born in 1977 and is a quali-

fied sports instructor with a degree in nutrition

and health. She has had type 1 diabetes since

she was four years old. In her youth, Camilla en-

countered considerable resistance and opposi-

tion in the health system. She also lost her sight

for a period but got it back again.

Today Camilla lives in balance with her disease.

She has used an insulin pump with success since

2006 and is being treated effectively for both

late complications and gluten allergy, which

is problematic for those with diabetes. In her

spare time, Camilla volunteers for the likes of

Save the Children, where she works with vul-

nerable children and their families. She is also

keen on adventure travel, such as skiing trips

in the mountains of Norway, not least because

she likes to feel in control of her life. Camilla

has given many talks on the challenges of being

partially sighted in the job market.

Special topics that camilla can cover in

both danish and english are:

- Experience of eye complications and how, unlike before, she can now cope with her dis-ease.

- Life before and after the insulin pump.

- A good relationship between patient and provider, including the joy of being consid-ered a complete person by health profession-als.

- Challenging yourself and your diabetes through travel and extreme sports.

- Camilla’s mother is also happy to come along and speak about life with diabetes from a rel-ative’s perspective.

1. camilla roSSil

Bente Brask Thomsen was born in 1965 and

works full-time as a shipping assistant at MAN

Diesel & Turbo. She has had type 1 diabetes

since 1974 and has enjoyed having an insulin

pump since June 2012.

Bente leads an active life – home, dog, motor-

cycle, travelling to southern Africa. She views

diabetes as a responsibility that can be hard to

bear, but aims to cope with the hard times as

best possible. She feels that the knowledge that

your health care provider knows your life his-

tory is invaluable for a chronic patient. A long-

term and trusting relationship with providers

will therefore always be important to Bente.

Special topics that bente can cover in

danish (preferably) and english are:

- The necessity of maintaining a good quality of life with a chronic disease like diabetes, even when the rest of your life is falling apart .

- Experience of taking part in research projects and building good long-term relationships with providers.

- Travelling to remote places where storing in-sulin and devices can be a challenge.

2. bente braSk thomSen

Erik Hageman was born in 1939. Before retiring,

he had his own business selling office furniture

for 38 years. He has had type 1 diabetes for 71

years without any significant complications,

which is very unusual.

Erik has always actively sought knowledge

about his disease and discussed his treatment –

previously to the bemusement of doctors and

other health professionals. His son also has dia-

betes. Erik is very active at Steno and has been

involved in the Danish Diabetes Association at

every level since early childhood. He helped

start up the Juvenile Diabetes Research Founda-

tion in Denmark and is an experienced speaker.

Special topics that erik can cover in

both danish and english are:

- How a positive outlook breeds commitment and the best basis for a long and good life with diabetes.

- Diabetes through the generations and how living with diabetes today compares with 65 years ago, especially in terms of schools and childhood.

- Having the courage to stand up to doctors and other health professionals to get the best treatment.

3. erik hageman

Charlotte Dam Junget was born in 1964 and

works as a product manager in the medical de-

vice industry, including on products for measur-

ing blood sugar. She lives with her husband and

two children, aged 14 and 18. She has had type

1 diabetes since she was 25 without complica-

tions, but stresses that this requires constant

effort.

Life has been a lot easier since Charlotte has had

an insulin pump. Her wish is to lead as normal a

life as possible without diabetes taking up too

much of her daily life. “Don’t let your diabetes

take over!” as she likes to say.

Special topics that charlotte can cover

in danish are:

- Life before and after the insulin pump.

- How to keep a diary of your disease and use this information when dealing with provid-ers.

- How to make room for yourself in a life with diabetes, work, family, exercise and so on.

- Diabetes and pregnancy: the joy, the fears and working closely with providers.

- What is it fair to ask of Charlotte as a patient?

4. charlotte dam Junget

Pernille Grøndahl Hoppe was born in 1964 and

works as a production coordinator in movie pro-

duction and communications. She developed

type 1 diabetes as a nine-year-old in 1973. Per-

nille is married to Kurt and gave birth to her

daughter Selma in 2005.

For Pernille, the key to everyday life is planning.

She has to plan everything – diet, insulin, exer-

cise – which can be a challenge in a job that of-

ten requires flexible working hours, long days

and travel.

Despite this, she leads a completely normal life.

There is no such thing as “diabetes food” in her

world, just a normal healthy diet that is enjoyed

by the whole family and even has a place for

a sweet tooth. In every respect, Pernille’s atti-

tude to her diabetes is that “it’s just something

that’s there”. Or as her husband puts it: “Per-

nille might just as well have freckles!”

Special topics that Pernille can cover in

both danish and english are:

- The challenge of pregnancy and weekly checkups while holding down a demanding job in the movie industry.

- Planning as a shortcut to greater freedom and quality of life.

- Pen systems and insulin from the user’s per-spective – from the very first NovoPen that so revolutionised treatment in the 1980s to the new FlexPen and FlexTouch pens.

5. Pernille grøndahl hoPPe

Svend-Aage Jespersen was born in 1937 and

worked in the aviation industry from 1955 until

his retirement. He has travelled widely in Asia,

Africa, the Middle East and Europe and has had

type 1 diabetes since the age of 11.

He copes well with diabetes and has it well-con-

trolled with an insulin pump. He has had sev-

eral accidents due to low blood sugar, has eye

complications for which he has undergone laser

treatment, and has had double-bypass surgery

and a valve replacement. He therefore has a

particular interest in the integration of diabetes

therapy with other medical fields, such as cardi-

ovascular disease and cancer. Svend-Aage pre-

fers to talk about his disease together with his

daughter Hanne Mette, who also has diabetes.

Special topics that Svend-aage can

cover in both danish and english are:

- Four generations of diabetes and dealing with a child with diabetes and the child’s re-action.

- Complications, low blood sugar and related diseases, especially late complications such as neuropathies, osteoporosis and broken bones.

- Life before and after the insulin pump.

- Anecdotes about diabetes in other countries and cultures.

6. Svend-aage JeSPerSen

Hanne Mette Jespersen was born in 1971 and

works in social services. She has lived with type

1 diabetes since she was five years old and has a

four-year-old son who has just been diagnosed.

Hanne Mette’s diabetes has not always been

well-controlled, due partly to episodes of de-

pression, and she therefore has some long-term

effects, but she now has it under control and is

on an insulin pump.

Hanne Mette has lived in the USA for periods

and is a passionate seamstress with her own

business who has even made clothes for Miss

Denmark. She is also an experienced speaker –

including on psychiatry, where she has talked

about chronic disease, depression and the im-

portance of aftercare and follow-up treatment.

Special topics that hanne mette can

cover in both danish and english are:

- Four generations of diabetes, potentially to-gether with her father Svend-Aage.

- Diabetes and pregnancy: the joy, the fears and working closely with providers.

- Life before and after the insulin pump.

- Depression, love and diabetes, and the spe-cial responsibility that goes with marriage to a diabetic.

7. hanne mette JeSPerSen

Tine Filges was born in 1973 and has run her own

analysis business conducting evaluations for

municipalities and hospitals since 2010. She lives

with her husband and her son, who was born in

2009. Tine was diagnosed with type 1 diabetes

in 1982 when she was eight years old. When she

was in her 20s, she had her eyes laser-treated

after a wild youth. Today she is well-controlled,

and she has had an insulin pump since 2012.

Tine helped start up a mothers group at Steno

while pregnant and is in general very outgoing

and committed to helping other people with

type 1 diabetes. She believes that diabetes stress

is an interesting area to work on, and finds ex-

ercise a big challenge due to high blood sugar

afterwards.

Special topics that tine can cover in

both danish and english are:

- Diabetes and pregnancy: the joy, the fears and working closely with providers – in-cluding the need for positive thinking from health professionals.

- Diabetes stress.

- How networking with other people with dia-betes brings support and happiness.

8. tine filgeS

Morten Krarup was born in 1958 and is CEO of

a small software company. He has had diabetes

since he was 12. Morten is now on an insulin

pump and is well-controlled, but this has cer-

tainly not always been the case. Neither in his

teenage years nor during a demanding career

did his diabetes always have priority.

Morten now lives a settled family life, of which

exercise and a healthy diet are a naturally inte-

grated part. Earlier in his career he chose not

to disclose that he had diabetes, but he is now

open about it in the workplace.

Special topics that morten can cover in

both danish and english are:

- What is needed to get good control.

- Combining a demanding career and a life with diabetes .

- How an insulin pump makes life with diabe-tes so much easier.

9. morten kraruP

Richard Skjoldager was born in 1985 and devel-

oped diabetes as a toddler, so he knows “only”

a life with diabetes. He is a trained carpenter

and qualified construction manager and works

for the Danish Building & Property Agency.

Richard has always taken responsibility for his

diabetes, but due to a fear of needles it was only

as a 14-year-old that he began to inject himself.

Until then he was dependent on his parents or

another adult injecting him. He subsequently

switched to an insulin pump, and it was a relief

no longer to be dependent on others.

He was given a special blood glucose monitor

in spring 2012 due to suspected nocturnal hy-

poglycaemia. His blood glucose levels have

become more and more stable, and he is now

close to his personal target for HbA1c. Richard

is a social person. It is important to him to lead

a life where he can do the same things as his

peers, together with his peers. He has therefore

always focused on making diabetes a natural

part of being with other people.

Special topics that richard can cover in

both danish and english are:

- Fear of needles – and ways of dealing with it.

- Life before and after the insulin pump – the freedom to go mountain biking and kite surf-ing, train at the gym and go out on the town.

- Digital tools that make life with diabetes eas-ier.

- Integrating diabetes in social contexts – at school, at work, at parties, at football.

10. richard SkJoldager

Oliver Breumlund was born in 1992 and is a

multiple Danish champion in wakeboarding,

waterskiing’s answer to snowboarding. He was

diagnosed with type 1 diabetes as a 15-year-old

when he was already training intensively with

the national team from 3 to 9.30 pm from early

April to late October.

It was hard to be diagnosed with a chronic dis-

ease. Oliver knew a lot about what it entailed,

as his big sister also has type 1 diabetes. But

after sticking the first needle into his stomach,

something he will never forget, he decided that

diabetes would not put a damper on his life. He

headed to Spain for a wakeboard training camp

just two weeks after being diagnosed. He has

since completed school and been on countless

journeys as part of his sport and his passion for

the related pursuits of snowboarding and skate-

boarding.

Special topics that oliver can cover in

both danish and english are:

- Extreme sports and diabetes – getting to know your body so you can still perform at the highest level.

- Being young with diabetes – teenage life in terms of school, parties and parental rebel-lion, and contact with staff on Steno’s youth team.

- Being cool about diabetes and not embar-rassed to talk about it or inject publicly.

Oliver has been featured in several wakeboard-

ing videos, including this one: https://vimeo.

com/43597854

11. oliver breumlund

Dorthe was born in 1990, lives in Copenhagen

and is studying to be a health service secretary at

Niels Brock. She has had type 1 diabetes since she

was 6 and has a relaxed attitude to her disease.

Her father also has diabetes, and she sees this

as a big advantage because she has experienced

diabetes as a natural part of everyday life all her

life.

Dorthe does not see life with diabetes as being

about renunciation and shame. She thinks that

her quality of life is reduced by surrounding the

disease with restrictions and bans. She really

loves food and mostly eats whatever she wants.

The disease does mean that she has to meet cer-

tain requirements, but she works hard to elimi-

nate the prejudice surrounding diabetes so that

people with diabetes can live freely and take a

relaxed approach to the disease.

Special topics that Dorthe can cover in

both Danish and English:

- Diabetes as a teenager. How to make diabetes work with (and not against) parties and enjoy-ing life as a young person.

- The future with diabetes and fear of compli-cations. Dorthe’s father has suffered a number of complications and is now almost blind.

- The challenges of taking insulin/GLP-1 and fol-lowing your own plan at school, at work and in active leisure time.

12. dorthe olofSen

Ib Brorly was born in 1932 and is a pensioner

who has had type 2 diabetes since he was 58.

Ib was diagnosed with diabetes “at the peak of

his career”, when he was CEO of Kodak’s Danish

operation. He has not had any major fluctua-

tions in blood sugar levels for 20 years and has

no notable complications.

Ib is very active in the diabetes world, includ-

ing as deputy chairman of the Danish Diabetes

Association and a member of various commit-

tees under the Danish Health and Medicines

Authority and the regional administration in

Copenhagen. He is also involved in Novo Nor-

disk’s DAWN and DAWN Youth schemes, where

he is exploring the psychosocial needs of people

with diabetes, and a member of Novo Nordisk’s

Global Patient Sounding Board.

Special topics that ib can cover in both

danish and english are:

- Living life to the full with diabetes.

- National initiatives and the people covered – especially chronic and elderly medical pa-tients.

- Patient feedback on new initiatives, patient information leaflets, products etc – happy to discuss the needs that other, especially elder-ly, users may have.

13. ib brorly

Klaus Baastrup was born in 1949 and is a retired

IT consultant. He was diagnosed with type 2 dia-

betes at the age of 51. At high school he suffered

from depression and attempted self-medication

with alcohol, which developed into alcoholism.

24 years in the IT industry were followed by 16

years on long-term sick leave and rehabilitation,

leading to chronic fatigue, a complete lack of

energy and severe obesity (peak weight of 148

kg, or 325 lb).

In 1989 Klaus began his “new life”, starting on

Minnesota Model addiction treatment, which,

he says, saved his life. He has been sober and

a non-smoker since 1989, and has trained as a

family therapist, alcohologist and addiction

counsellor. He is also a qualified sports, fit-

ness and running coach. From 1974 to 1986 he

chaired the Danish Heart Association’s exercise

club in Lyngby and was responsible for training

for the Eremitage Run (approx. 13 km).

Klaus began to gain control over his diabetes in

2010 and has lost 30 kg, or 65 lb, to date, part-

ly through GLP-1 therapy and partly through

better treatment for depression and long-term

exercise and diet planning. He is very outgoing

and an experienced speaker.

Special topics that klaus can cover in

both danish and english are:

- Five hurdles for blood sugar management: depression, alcoholism, sleep apnoea, over-eating and Co-dependency.

- A holistic approach to GLP-1 therapy: medi-cine, food and exercise are not enough – you need to include everything (physical, psycho-logical, emotional and spiritual).

- Get networking! Sharing experience, strength and hope with like-minded people will help you help yourself.

14. klauS baaStruP

Benny Schatz was born in 1949 and works as a

travel photographer and sales consultant. He

was diagnosed with type 2 diabetes in 1987 and

has moved from diet/exercise to tablet therapy

to his current tablet and insulin therapy.

As a photographer, Benny has travelled to Bur-

ma, India, Thailand, Peru and Ecuador without

having found diabetes a hindrance – in fact this

high level of activity led to better management.

Benny was a schoolteacher for many years,

teaching English and music, but was pensioned

off in 2006 after three long bouts of foot com-

plications due to reduced sensation.

Special topics that benny can cover in

danish and english are:

- Living with a wide range of diabetes compli-cations, and how this can affect your status in the job market.

- Realising your dreams and not allowing your-self to be held back by diabetes.

15. benny Schatz

Christian Petersen was born in 1981, is a quali-

fied sports instructor and is studying to become

a schoolteacher at evening classes. He also works

as an instructor at a special school in Herlev

where he teaches athletics and swimming. Chris-

tian was diagnosed with type 2 diabetes as an

18-year-old following the medical checkup for

his driving licence. This came as a big shock, as

nobody else in his family had the disease.

It was hard at first to relate to a disease that

everyone associated with “old people”, as he felt

young and healthy. He was a competitive swim-

mer from the age of nine until he was 16, after

which he gained 50 kg, or 110 lb, so by the age

of 18 he weighed 135 kg, or 300 lb. As he is very

tall (6’ 6”), he did not really notice. Christian has

now lost weight and is doing well with his dis-

ease through exercise, healthy eating and GLP-1

therapy. He is planning to run a marathon and

views his diagnosis as a positive turning point in

his life.

Special topics that christian can cover

in both danish and english are:

- What it is like to be diagnosed with type 2 di-abetes as a young person, and the upheaval this brings.

- Successfully changing your lifestyle – from “fat boy” to an active life.

- How being diagnosed with type 2 diabetes can change your life for the better and give you a new and improved outlook on life.

16. chriStian PeterSen

Eva was born in Aarhus in 1962 and lives in Fred-

eriksberg in Copenhagen. She studied English at

CBS and journalism at the Danish School of Me-

dia and Journalism. She is also a trained clothes

designer and specialises in fur. Eva works as exec-

utive assistant at the Association of Danish Mort-

gage Banks. She is still passionate about design

and works in her free time as an author, pub-

lishing her own work, and as a guest teacher at

institutions such as Skals College of Design and

Needlework).

Eva was diagnosed with type 2 diabetes in 2005

at a health checkup at work. Before this, she had

had strong symptoms (shivers, frequent urina-

tion, very thirsty) for 9 months but paid them

little attention in her busy working life. Both of

Eva’s parents and all four of her grandparents

had type 2 diabetes and her husband has type 1

diabetes. Eva has decided to be open about her

disease but personally she finds it difficult to ac-

cept life with a chronic disease and the restric-

tions it entails.

Special topics that Eva can cover in

both Danish and English:

- Change of lifestyle. Even if you are a well-ed-ucated, well-organised person at work, it can be almost impossible to change your dietary and exercise habits.

- Diabetes in the family: how to talk about and work together on diabetes, plus breaking down prejudice about type 2 diabetes.

- General practice versus specialist diabetes treatment.

- Cardiovascular disease, life before and after GLP-1 treatment and the fear of insulin.

17. eva deigaard lePri

Fakhra was born in 1974 and lives in Nørrebro

in Copenhagen. She is a Muslim with a Pakistani

background and was born and grew up in Den-

mark. Fakhra trained as a clerk and was married

in 2001. In 2014, she had a son and before she

was pregnant she worked as a case officer in the

area of cash benefits for the City of Copenhagen.

Fakhra was diagnosed with type 2 diabetes in

connection with fertility treatment in 2004. Both

of Fakhra’s parents have type 2 diabetes and her

younger sister, who was overweight as a child,

was diagnosed with type 2 diabetes when she

was just 13.

Fakhra was referred to Steno Diabetes Center

and Copenhagen University Hospital in connec-

tion with her desire to become pregnant. Steno

was able to ‘shake up’ her bad habits. For ex-

ample, she stopped her large Coca-Cola con-

sumption, lost a lot of weight and got her blood

sugar under control. Fakhra eats both Danish

and traditional Pakistani food and is aware of

the challenges both cuisines present to a person

with diabetes.

Special topics that Fakhra can cover in

both Danish and English:

- Cultural challenges and diabetes: Ramadan, traditions and the lack of knowledge about diabetes, in particular among older citizens with a Pakistani background.

- Diabetes and pregnancy: motivation, joy and hard work.

- Acceptance of diabetes – essential to the abil-ity to live well with diabetes, so that it does not become a burden.

18. fakhra maJeed

Steno Diabetes Center A/S, Niels Steensens Vej 2, 2820 Gentofte, Tlf. +45 3968 0800