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** Unique patient-led and co-authored analysis of the experience of living =
with myasthenia gravis published in Neurology and Therapy
------------------------------------------------------------
=C2=B7 New analysis led by patients from across Europe and the United State=
s provides first-hand insight into the lived experience of myasthenia gravi=
s
=C2=B7 The analysis highlights five key themes that are central to the pati=
ent experience
=C2=B7 Patient advocates behind the paper call for greater understanding of=
myasthenia gravis and more open dialogue between patients and doctors
Brussels, Belgium and Atlanta, Ga. =E2=80=93 27 October 2021 07:00 =E2=80=
=93 =C2=A0A new, patient-led research analysis published this week in the j=
ournal Neurology and Therapy reveals the lived experience of myasthenia gra=
vis (MG) and calls for greater understanding of the reality of living with =
MG, through the eyes of the patient.
In a collaboration between people living with MG and UCB, a global biopharm=
aceutical company, =E2=80=98The Lived Experience of Myasthenia Gravis: A Pa=
tient-led Analysis=E2=80=99 is a unique, patient study to explore and asses=
s the real-life impact of MG and current gaps in care. The qualitative rese=
arch explored the significant physical, psychological, social and day-to-da=
y experience of living with the rare autoimmune condition and identifies a =
need for improved dialogue between patients and clinicians. The study was l=
ed by the Patient Council =E2=80=93 nine individuals living with MG who ser=
ve as patient advocates across Europe and the United States =E2=80=93 and c=
o-authored by two Patient Council members.
=E2=80=9CThis patient analysis has unearthed the true reality of what it me=
ans to live with myasthenia gravis,=E2=80=9D said joint lead author Kelly D=
avio, MG patient expert, London, UK. =E2=80=9CListening to individuals and =
exploring what their insights mean for the current care of patients is an e=
ssential project and our findings will help fill a significant number of kn=
owledge gaps. Our research has clearly highlighted an urgent need for impro=
ved physician-patient communication and greater, more nuanced understanding=
of MG =E2=80=93 not only the physical symptoms, but how the disease impact=
s patients=E2=80=99 everyday lives.=E2=80=9D
MG has annual incidence of 8 =E2=80=93 10 cases for every 1 million and can=
occur at any age and in any race.[1]^,[2] As a chronic neuro-muscular cond=
ition where the body=E2=80=99s immune system mistakenly targets the connect=
ions between nerves and muscles, patients can experience unpredictable, flu=
ctuating symptoms such as fatigue, muscle weakness and difficulty breathing=
and swallowing.[3]^-5[4][5]4444^
Five key themes on the reality of living with MG[6]
Analysis of the qualitative patient research uncovered five key themes that=
are central to the patient experience:
1. The lives of people with MG are dominated by unpredictable, fluctuating =
symptoms, with periods of worsening and remission, causing uncertainty that=
makes planning challenging and creates feelings of vulnerability, which pa=
tients describe as being worse than the physical symptoms themselves
2. Consequently, people with MG constantly have to adapt and accept trade-o=
ffs as part of their everyday life =E2=80=93 including in the critical area=
s of work, family planning and treatment
3. Patients perceive a =E2=80=98treatment inertia=E2=80=99 in both themselv=
es and their clinicians, which results in them not always receiving the lev=
el of care they need
4. People with MG can feel disconnected from their physicians due to commun=
ication barriers and conflicting perspectives on the disease, treatment bur=
den and treatment goals
5. MG takes an emotional toll on patients, with many experiencing feelings =
of anxiety, frustration, guilt, anger, loneliness and depression, driven by=
the burden of disease, social isolation, loss of control and lack of suppo=
rt
=E2=80=98Matthieu=E2=80=99, a patient living with MG said: =E2=80=9CPeople =
don=E2=80=99t really understand the everyday experience of myasthenia gravi=
s. It can have a negative impact on almost all aspects of your work and fam=
ily life, including basic functions of moving, eating, talking, and breathi=
ng. I hope this report will help drive a greater understanding amongst phys=
icians and the general public, on the reality of living with this condition=
=E2=80=93 not just in terms of physical symptoms, but also in how we have =
to constantly adapt our lives just to manage and the emotional impact this =
has.=E2=80=9D
Kenza Seddik, UCB Patient Experience Lead & co-author added: =E2=80=9CWhile=
myasthenia gravis is rare, reported incidence rates are increasing, which =
is thought to be due to improved diagnostic techniques and an increased awa=
reness of the disease. There is a growing wealth of published literature on=
myasthenia gravis, but few studies have explored the nuances of the patien=
t experience. Through this analysis, we aim to give patients a voice so tha=
t we could gain a deeper understanding of the multifaceted lived experience=
of this condition. We hope that by sharing the findings from this study, w=
e can help facilitate better-informed patient care and trigger more interes=
t in listening to what patients say and putting their interests first.=E2=
=80=9D
The development of =E2=80=98The Lived Experience of Myasthenia Gravis: A Pa=
tient-led Analysis=E2=80=99 manuscript was led by two patient advocates MG,=
Nancy Law from Colorado, USA and Kelly Davio from London, UK. The report i=
s the result of detailed patient input and an exhaustive literature search,=
offering an unprecedented level of first-hand information for healthcare p=
roviders into the challenges facing people living with the condition. The s=
tudy has been published posthumously following Nancy=E2=80=99s death in Sep=
tember 2021 and her invaluable contribution to this paper and leadership of=
the MG patient advocacy community is hugely appreciated by all involved. =
=C2=A0
About myasthenia gravis
MG is an unpredictable, chronic auto-immune condition in which auto-antibod=
ies attack specific proteins at the neuro-muscular junction. This disrupts =
the way that nerves can communicate with muscles, resulting in muscle weakn=
ess and fatigue. Both men and women are impacted equally, and it can occur =
at any age and in any race. Myasthenia Gravis is a rare disease with an ann=
ual incidence of 8 =E2=80=93 10 cases for every 1 million^1. Those living w=
ith MG can experience a variety of symptoms, including drooping eyelids and=
double vision as well as severe muscle weakness that can result in life th=
reatening weakness of muscles of respiration.=C2=A0
About UCB in Rare Diseases
At UCB, we don=E2=80=99t just see patients or population sizes, we see peop=
le in need. Through decades of serving the neurology and immunology communi=
ties, we have improved lives with impactful medicines and by enhancing the =
social and emotional well-being of patients. As a continuation of our herit=
age, we are now expanding our efforts to tackle rare neurological and immun=
ological diseases where current options offer little hope.
About=C2=A0UCB
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company =
focused on the discovery and development of innovative medicines and soluti=
ons to transform the lives of people living with severe diseases of the imm=
une system or of the central nervous system. With more than 7 600 people in=
approximately 40 countries, UCB generated revenue of =E2=82=AC 5.3 billion=
in 2020. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Tw=
itter: @UCB_news
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Media Relations, UCB=C2=A0
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Investor Relations, UCB
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[1] Gilhus N et al. Myasthenia Gravis. N Engl J Med. (2016)29;375(26):2570-=
2581. Doi: 10.1056/NEJMra1602678
[2] Carr, A.S., Cardwell, C.R., McCarron, P.O.=C2=A0et al.=C2=A0A systemati=
c review of population based epidemiological studies in Myasthenia Gravis.=
=C2=A0BMC Neurol.=C2=A010,=C2=A046. (2010) 18;10;46. Doi: 10.1186/1471-2377=
-10-46.
[3] National Institute of Neurological Disorders and Stroke. Myasthenia gra=
vis fact sheet. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Educa=
tion/Fact-Sheets/Myasthenia-Gravis-Fact-Sheet (Last accessed: September 202=
1).
[4] Myasthenia Gravis Foundation of America. Myasthenia gravis quick facts.=
https://myasthenia.org/What-is-MG/MG-Quick-Facts
(Last accessed: September 2021).
[5] Conquer Myasthenia Gravis. What is MG? https://www.myastheniagravis.org=
/about-mg/what-is-mg/ (Last accessed:
September 2021).
[6] Law, N., Davio, K., Blunck, M.=C2=A0et al.=C2=A0The Lived Experience of=
Myasthenia Gravis: A Patient-Led Analysis.=C2=A0Neurol Ther=C2=A0(2021). h=
ttps://doi.org/10.1007/s40120-021-00285-w
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